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Conivinced I May have Celiac Disease But Doctor won't Test for It???

I would like anyone's opinion on how I should proceed here. I had never heard of Celiac Disease until about a week ago... I have been having Symptoms that relate to Celiac since I was a small child. Let me begin there... As a child I had seizures. They went away at around 2. I have always had very bad stomach problems. Nausea, weird abdominal pain, vomiting, and cramps with bloating sometimes. As a child I also had anxiety problems and mood swings. The doctors always said I had a nervous stomach. Of and on I would have other strange things pop up and go away. When I was in college I lived in a house that was mold infected and afterwards My problems worsened. I began having seizures again (temporal lobe). I was having panic attacks, sleep problems, diagnosed with severe depression, and all of a sudden they said I had ADD. Now I am 40 and for the past 10 years I have still been having all of the above problems plus I have had Kidney Stones, they now say I have Hypothyroidism, High Blood Pressure, Osteo-arthritis, really bad joint pain, muscle cramps, tingling in my extremities, bad fatigue, sleep problems, seizures that they can never seem to find a reason for, edema, I have become lactose intolerant, and I was diagnosed with foliculitis but, I also have a rash on my hands and legs and buttocks that is not consistent with foliculitis (it is more like blisters under a layer of skin but they don't pop or anything). Can anyone tell me if They think this is Celiac's?   Oh, I am also Insulin resistant and I asked my Endocrinologist to test me for Celiac and he told me no???? What is that all about? One last thing.... I have also tested off and on as being anemic and also I had to be hospitalized once because my  potassium level was extremely low. Also, I have been diagnosed with something and then the doctor's would come back later and say no we don't think you have that now. Another thing that is odd is that some days I feel ok on some of my symptoms and then some days I am sicker then a dog... Could the sudden change have to do with what I eat. Should I go to another doctor and get tested? Is the blood test real expensive or something? Not sure how to proceed but I am honestly at my ropes end with this.... No doctors seem to want to help me figure out what is causing all this.... Thank for any help you can give me.....
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177554 tn?1256353793
Have you seen a gasterointerologist? You should keep going till you find a doctor willing to test you. I can't imagine every doctor in your area is against the idea.
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Avatar universal
Thanks for your comment to my post ; )  I haven't seen a Gasterointerologist yet but going to one is on my list... Trying to find a good one in the area now... I have been to Internal Medicine Doctors, and Endocrinologist, Neurologists, Psychiatrists, Rhuemitologist, Orthopedic Surgeon, Urologist, Oncologist, Otolaryngologists, Epileptologist, and a Bariatric Doctor to name a few..... None of them ever mentioned Celiac Disease to me but, all my symptoms seem to be associated with Celiac Disease so, that got me thinking it might be the cause of some of my medical problems. Trust me, I am trying to figure this out, lol.... All I want is to get better and be able to have a normal life again ; )
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Avatar universal
Enough of your symptoms sound consistent with Celiac, that I hope you persist in getting a doctor to test you.  A gastroenterologist is your best bet, but an Internist or Family Practice doctor could order the blood tests, if it takes you a while to find a good gastroenterologist.  There is a good movie on Youtube on Celiac disease which discusses, among other things, exactly what blood tests are recommended.  You could take this information to your doctor.  The movie is at the following URL:
http://www.youtube.com/watch?v=QR2LvQmoF1Y

Good luck to you.

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481426 tn?1267491240
It definetely sounds  like you could have Celiac. I think you should try the diet as  a trial until you find a Doctor. My thought is if that is it then you are causing some serious system damage to your body if your not, no biggy you just cleansed your body from gluten for a while. With the testing I have never tested positive for the biopsy or the blood work yet my symptoms speak for themselves, aching all over, joint pain, stomache problems, excessive bloating and an all over foggy feeling. My endocrinologist accepted this and stated there are many false negatives and that is the nature of the disease but he trusted my instincts and the lack of symptoms when I had been off of a gluten diet for some time. Do some research for an open minded gastroentologist, you are your best advocate.
Take care
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Avatar universal
If you go gluten free before being tested for Celiac, you may get a false negative on both blood tests and the biopsy.  I have never been into eating a lot of bread, and my blood tests were positive, but not very high positive.  My GI doc told me not to stop eating gluten before he could schedule a biopsy, which was definitely positive.  I understand the damage to the intestine can be spotty, and there is more chance of missing a damaged area if healing has started from eliminating gluten.  Usually they sample multiple places for the biopsy.

My husband went on the gluten free diet with me during a long vacation, then got sick when he ate gluten at work one day.  The doctor told him he had to go back on gluten at least 6 weeks to get a positive test, if he has celiac.  He didn't want to be sick that long, so decided to just stay off gluten.  We don't know if he has true celiac, or is gluten intolerant, but as long as he stays gluten free and feels better perhaps an exact diagnosis doesn't matter.  The YouTube movie I mentioned in a post above talks about the distinction between celiac and gluten intolerance - more research needs to be done to answer this question better.

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352798 tn?1399298154
You can order gluten sensitivity tests without a Dr from entero labs .com (one word) They are about $260 or so.
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352798 tn?1399298154
I keep wanting to put the 's' there. It is enterolab.com.
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268911 tn?1213744781
One sure way to find out for yourself is to go on a gluten free diet.  This is extremely difficult as gluten is the second most consumed iten in the USA....sugar is first.  You must eliminate all bread, pasta, salad dressing, croutons, beer, ketchup, some kinds of vinegar and the list goes on.

Google "Celiac symptoms" and I'm sure you will be amazed at how your symptoms sure seem to fall in line with this disease.  As to your doc not testing you for it there is a reason.  Most doctors are unaware of this problem and since there is not medical cure for Celiac's disease they almost always diagnose people with IBS or some other "syndrome."  Your doc cant make any money on you which is probably why he wont test you for it.  THis has been my experience.

Keep posting here..going2makeit has helped me lots over the past few months.
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529075 tn?1213460050
I disagree, I do not believe going onto a gluten free diet is extremely difficult. If you rely on pre prepared foods or processed junk, then you may find it difficult--but thats only because you are breaking poor eating habits that you've taken your lifetime to acquire! Eating gluten free is relatively simple. Eat plenty of fresh fruit and vegetables, dairy products, rice, chicken, fish, beef, raw nuts/seeds. Honestly it isn't complicated to stick to a gluten free diet.

& FYI Your doctor gets paid for every procedure he orders for you, which means at LEST four blood tests a year, usually more. If you are worried your doctor is not diagnosing you correctly because of financial gain on his part, get a new doctor.
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Avatar universal
You sound like you too are trying to get to the bottom of all your issues. I am sorting things out for Celiacs as well. Doctor's dont know much about this. I called the Celiacs Foundation here in my area and this is what I did. I contacted Prometheus labs and ordered the genetic test for Celiac. It is 95-99% accurate. They are looking for the gene. Celiac's is hereditary and causes so many issues and doctors are unaware. I then took the kit to my doctor, explained it all to him and he then sent me to the lab to have the blood drawn. We are now waiting for results. This is the most accurate test. The other antibodies marker test only will show positive if you have been eating gluten and is still has a high error margin. One good sign is does your poop float. The gal from the foundation said yep, you probably have it when i finished with that bit of information. I can empathize with your ordeal and it seems like all doctors want to do is prescribe you meds without getting to the root of the problem. This test is a bit expensive but it could be the cause of all your other problems and if you have it you could have passed it to your children and they will need to be aware. Hope this helps.
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Avatar universal
Don't be surprised if your doctor is still unwilling to diagnose you even with a positive genetic test.  I have the "celiac gene" but what most doctors take that as is that you are just more susceptible to developing Celiacs at some point.  I guess it is something like 97% of Celiacs have the Gene, but maybe not all people with the Gene have Celiacs; I don't know I never really got a clear answer on that.  I have a real problem with that anyways because of how hard it is to get a "diagnosis" and how many undiagnosed Celiacs there are.

But unfortunately there isn't a great pass/fail test out there, that can be conclusive; they can either give false positives or mostly false negatives.  You are right, the genetic test is pass/fail, but unfortunately most doctors won't use that alone for diagnosis.  Most doctors will run the antibodies test next, and it may give false positives; so what is indicated in one test appears to be false in another test.  For me, I don't really care about a diagnosis so the gene along with positive results from a gluten free diet are all that I really need.
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Avatar universal
I'm anxious to hear what your results were, and I hope you're doing well. Please post an update soon. :)
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Avatar universal
Also, there is an at home blood test called the biocard that can be ordered for $50. It will provide enough evidence to convince difficult doctors to order the test for you. There is also a letter on the site to help you explain things.

http://www.celiachometest.com/

http://www.celiachometest.com/biocard_test.html
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Avatar universal
Hello Everyone,
Thanks for all your advice and concern. I finally found a doctor that decided it might be beneficial to get tested for Celiac's. Just so happened it was a new Neurologist that I had gone to for my Siezure problems. I finally got the tests results after waiting about 2 weeks on pins and needles. It was negative for Celiac antibodies so, I'm back to square one again and not sure what to do. I've read that false negatives are common with the blood test so, I'm not sure if I should take it again or just go on a Gluten free diet. However, I do know that I am totally fed up with doctors, lol. None of them really seem to know what to do or even care for that matter. I hope everyone is doing ok and I appologize for being so slow with my response.
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Avatar universal
Hi Troy, that's great news. Blood tests for CD can have false negative or false positive results. But genetic testing, similar to the one you took at Prometheus, are usually accurate. Supposedly, blood tests, such as ttg etc, confirm who does "not" have CD, but genetic testing reveals if the possibility is in your genes at all.

In fact, genetic testing can be given, whether someone is eating gluten or not. Also, having the genes does not guarantee you'll develop the disease. Still, to be on the safe side, if your doctor is willing, maybe he or she can order an endoscopy just to check things out.

To my knowledge, Celiac Disease, gluten intolerance, and wheat allergy, are ALL food intolerances.

The difference(someone correct me if I'm wrong) is that food allergies and intolerances are immune system reactions to trigger foods. In contrast, CD is a food induced reaction, which does NOT involve the immune system, but causes a reaction in the digestive tract, that results in gastro and other problems.

If it turns out you do not have CD, it's very possible that you have a severe allergy or high intolerance to wheat and gluten, which could cause a variety of physical, intestinal, and mood problems. In that case, you may benefit from seeing an allergist, rather than a gastro or endo doctor. JMO
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Avatar universal
AFTER READING WHAT YOU ARE GOING THROUGH I THOUGHT I WOULD WRITE TO YOU... I WAS BORN WITH CELIAC SPRUE BUT IT NEVER BECAME EVIDENT UNTIL I WAS IN MY FIFTIES... I SUFFERED HORRIBLE ABDOMINABLE PAINS, VERY SWOLLEN ABDOMIN, GREEN STOOLS, ECT...  I HAD TO SEE A NEUROLOGIST BECAUSE I WAS HAVING REACURRENT TIA'S AND HE ORDERED UP LAB WORK, TAKING 21 VILES OF BLOOD FROM ME, BUT TESTING ME FOR EVERY POSSIBLE CONDITION HE COULD THINK OF....  WHEN THE RESULTS CAME BACK, I WAS 99.9% FOR GLUTEN ENTEROPATHY, WHICH IN REGULAR TERMS WAS CELIAC SPRUE...  I WAS REFERRED TO A GASTROENTRO DOCTOR AND HE DID AN ENDOSCOPY GOING DOWN INTO MY STOMACH AND SMALL INTENSTIN AND TAKING A BIOPSY OF THE SMALL INTESTIN TO CONFIRM THE DIAGNOSIS...  HE DID CONFIRM THAT I DID HAVE CELIAC SPRUE, AND THE ONLY WAY YOU CAN CONTROL THIS DISEASE IS TO GO ON TO A GLUTEN FREE DIET...  I SAW A NUTRIONIST TO FIND OUT WHAT I COULD AND COULD NOT EAT...  IT WAS AND IS VERY DISHEATENING, AND FOODS MADE FOR CELIAC'S ARE ON THE EXPENSIVE SIDE...  BUT ANYWAYS, YOU NEED TO FIND A GOOD GASTROENTEROLOGIST, GET THE CORRECT BLOOD TEST DONE, HAVE THE ENDOSCOPY DONE WITH BIOPSY TO CONFIRM, IF AT THE POINT THE BLOOD TEST INDICATES YOU HAVE HAVE THIS DISEASE, AND GO FROM THERE...   GOOD LUCK AND GOD BLESS...  KATRINA39  
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Avatar universal
ALSO, I WANTED TO LET YOU KNOW THAT I HAVE HASHIMOTO THYROID DISEASE, FIBROMYALGIA, DERMATITIS HEPETIFORMIS WHICH IS A RASH THAT I GET AND THAT MAYBE THE RASH YOU SPEAK OF...  ALSO, IF YOU ARE LACTOSE INTOLERANT, THAT IS COMMON WITH CELIAC DISEASE, AS WELL AS YOU COULD HAVE NEUROLOGICAL PROBLEMS SUCH AS SEIZURES, WHICH MAY EXPLAIN YOUR SEIZURES...  ANOTHER THOUGHT IS TO SEE A NEUROLOGIST, BECAUSE I HAVE ALSO HAD SEIZURES, AS WELL AS OTHER NEURO PROBLEMS...  ARE YOU FATIGUED, DEPRESSED, ANEMIC, DO YOUR BONE OR JOINTS HURT, DO YOU GET MUSCLE CRAMPS, DIABETES I?  I ALSO HAVE MANY OF THESE PROBLEMS BECAUSE OF THIS CONDITION...  I HAD TO DIG OUT ALL OF MY MEDICAL PAPERWORK, SO I COULD LET YOU KNOW WHAT I DEAL WITH AND IT MAY CORROLATE WITH WHAT YOU ARE DEALING WITH...  JUST WANTED TO TRY AND GIVE AS MUCH INFO AS I COULD...
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Avatar universal
Hi Katrina,
Yes I think I have had almost everything you mention. I am constently fatigued and I get anemic off and on. I have ben diagnosed as having Major Depressive Disorder, I have gotten muscle cramps for as long as I can remember, and I have bone and joint pain. I do not have Diabetes but, I am very Insulin Resistent (Pre-Diabetic). I thought I was lactose intolerant but now I am not sure. I can drink milk with no problems but, If I eat Ice Cream I get sick afterwards. I think it may be the fructose instead of the lactose that makes me sick. I'm not real sure but I read that people that cannot handle fructose have symptoms similar to lactose intollerance. I did find out that my thyroid is underactive and the rash I spoke of can show up like little blisters but they are not too awful bad. I have seen pics online of Dermatitis Hepetiformis and mine is similar to that but no where near as bad. But, I can show up like that or also like a more acne-like rash. I have had the stomach pains and cramps you mentioned since I was a child. All of this other stuff started showing up in my 30's. Honestly, I am just really tired and sick of dealing with rude doctors, lol.
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Avatar universal
Hi kiddo, it is sad so many of us share so many things and doctors still think we are crazy. I was diagnosed-ish with Celiac in 2001 after a hospital stay for acute dehydration. All my tests came back negative for celiac but I do great off of gluten and get gastritis and incredible pain if I have any. I also developed a corn allergy that causes me to get the blisters under my skin. Maybe you are having a corn allergy as well? I had read it is the casiene in milk that is a problem for celiac's not the lactose so much, I have trouble even with the cheese alternative stuff that has that as a binder. I also have hashimoto's disease and ended up having my thyroid removed last year. My blood sugar is always off, I have muscle pain all the time they can't figure out, also have been having alot of constipation and lower left abdominal pain, gastritis, fatigue etc... no seizures though :) All my stuff started when I was 16 with milk/depression, 24 for gluten, 25 for corn, 27 for thyroid/asthma/allergies. I have been told to see a therapist by so many doctors I end up feeling sick before I have to meet a new one now :/ I think that is a very common complaint for anyone that has any sort of opinion about their own health :/ good luck

kitty
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Avatar universal
A celiac panel must be ordered by a Dr who knows what he or she is doing. These Dr's are very difficult to find. A gastroenterologist who is commonly diagnosing Celiac can also order the blood panel. Only one or two labs in the nation can properly run these blood panels. It must be sent to a lab that knows how to test for Celiac. Most labs do not.
I know one of these labs is in San Juan Capistrano. My blood was shipped from Ok all the way to this lab for proper diagnosis. I finally ended up at a place that could properly diagnose me after one failed visit to a gastro in the early 90's and tons of assorted Dr's who don't know what they are doing.
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Avatar universal
I'm sorry to hear that you have been so sick.

I think you'll find after much frustration that it is really not necessary to rely on tests and a diagnosis. I accidentally got off gluten last year when I started a candida diet (one that did not allow gluten grains for the first 3 months). The result was that my skin rashes went away, my hair stopped falling out and I went through the typical celiac gluten-withdrawal symptoms. Shortly after that is when I first heard about celiac disease... and it was then that I KNEW.

Nevertheless, I really wanted that diagnosis. When I went to see a specialist about it she listened to my symptoms, tested me for vitamin deficiencies and gave the diagnosis "Presumptive Celiac Disease." She absolutely did not want me to go back on gluten in order to get a "official diagnosis". She simply tested me for illnesses associated with Celiac and started treating me for my symptoms and vitamin deficiencies. After that, I told people that I was diagnosed with Celiac Disease. It really doesn't matter. My doctor says that I do, my symptoms say that I do, I eat like I do and I live like I do. If it looks like a duck and quacks like a duck it's a duck. Truly, nobody needs the rundown of my experiences or the explanation of exactly what took place and why. I'm not auditioning for the role "person with celiac disease". This is my life. You know what I mean? It's not about them.

Yet, that diagnosis was so important to me at first. After years of suffering and being mistreated and pushed and pressured and judged by people who do not understand the debilitation of illness (unless you have a spectacular title like MULTIPEL SCLEROSIS or CANCER or whatever)--and after years of having insensitive, skeptical bosses and self-centered demanding, skeptical friends--and after years of being mistreated by grumpy skeptical doctors, I really wanted a good-sounding diagnosis to defend and protect and to validate me, but in the end what I really needed was to stand up for myself and avoid the insensitive people who made my already difficult life more difficult.

Also, if the reason that you feel like you need a diagnosis is to get proper medical treatment or to decide what to eat. Here's what I found out. If you are this sick, you need to change your whole diet and your whole life even if you do not have Celiac Disease. There is no proper treatment for a body that is this out-of-balance--one that is malfunctioning in so many different ways. No treatment is good enough to be a "cure" or to cover it all the bases. Side effects cause a chain reaction in all directions. When your body is this out of balance even getting off of gluten will not be enough to completely heal. (And doctors in the U.S., unfortunately, just don't know enough to help with all of the angles).

In the end, I needed to do a lot for myself. You may be too sick to be able to identify it now, but people with Celiac Disease react horribly to everything--hormones in meats, chemicals in additives, and everything that is difficult to digest like proteins, disaccharides/polysaccharides and cooked fats. We react to everything unnatural in the environment--fragrances, cleaning products, plastics. (It's just that most of us have been sick for so long we don't know how badly these things effect unless we can get away from them long enough to feel what it feels like without them). I, personally, can't even take vitamins, probiotics or enzymes (but I didn't know it at first because my reaction to them was burried by my other symptoms). Also, people with Celiac tend to have a problem with Candida overgrowth (due to really bad digestion and a very damaged immune system) and a problem with the decreased ability to detoxify from hormones and chemicals. It is a tight-rope walk to get everything back in balance.

I started a combination of the SCD diet (which is the original Celiac diet geared to also prevent the growth of bacteria and fungus in the remaining poorly-digested food found in the intestines of Celiac patients) and the raw foods diet (which is geared for optimal digestion and optimal vitamin intake). I also keep my environment "green" and avoid all chemicals. Maybe not everyone thinks this is necessary, but everything you do to help your gut digest things better and everything you do to prevent your body from being exposed to chemicals gives your exhausted body a break and a chance to heal.

If you really, really want to get better, most doctors do not know enough about Celiac disease for them to be enough of a help--even gastroenterologists. Doctors rely heavily on tests, diagnosis and prescriptions (including prescriptions for large vitamin doses) but unforunately Celiac can elude tests, it can be very difficult to diagnose conclusively, and prescriptions don't work extremely well with a body out of balance.

Does anyone else find that they have to do more than what their doctors say to feel well?
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Avatar universal
Here's my 2 cents worth of experience: I suffered for about 60 yrs - that was probably what was wrong with me even as an infant.  I'm 66 now and been on a dairy free diet for about 25 yrs (that was only part of the solution - dx by the first gastroenterologist, though he did NO testing for it, only guessed) and gluten free about 6 yrs.  Before the GF diet I had classic Celiac symptoms for so long, I didn't know what it was to be normal.  I was underweight all my life and "sickly"-- yet no family doctor , gastroenterologist, dermatologist, allergist, neurologist, Ob-gyn, or even 2 ER visits for sever diahrrea, vomiting and swollen intestines (once they even threatened to surgicaly remove part of an almost swollen closed intestine) ever produced even one mention of Celiac Disease. And every single doctor knew I had digestive problems...because I told them so!  It took my post-doctoral molecular biologist daughter-in-law a short time researching on the internet to figure it out.  "Look", she says, "you have every single one of these symptoms - it's a text-book case!"  As you can imagine, by this point in my life, I was pretty angry with doctors, as I had been told all sorts of nonsense...except Celiac disease! (I was obviously pretty dense to not figure it out myself!) So, I immediately went on a gluten free diet to see if it would help.  I soon began felling better than I could ever remember feeling, eventually gained a normal weight for the first time in my life, and no more anemia episodes.  Best of all, ALL the digestive symptoms have been gone these 6 yrs!  I'd say that is a pretty definite diagnosis!  It's a sorry fact that the blood tests and endoscopy are still NOT 100% accurate, as you will soon discover if you read the professional literature -- so what is the point of submitting yourself for those tests when the diet IS 100% accurate - IF IT CURES YOU!   Unfortunately, my Celiac wasn't caught early enough, so now I have significant osteoporosis and have to be very careful, along with some other autoimmune problems - -Hasi/hypothyroid, Sogren's, and some arthritis.  So, if your doctor is not giving you the tests you need or willing to search for the answer, find yourself another doctor or just try the diet for a few months and see what happens!  Not all of the doctors were listening when the Celiac lecture was given in medical school, or for that matter, graduated at the top of their class!
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Avatar universal
There are NEVER false positives for blood tests for Celiac. False negatives, yes.
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Avatar universal
If you do genetic tests through Enterolab (google it) they test for DQ1, the gene that they think is connected to gluten sensitivity and RA, and other neurological manifestations of CD and GS, like depression, anxiety, seizures, etc.
Good luck to you.
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