Hi i have recently tested for celiac disease in order to try to figure out whats wrong with me since my endoscopy and colonscopy were both normal. i have trying to push the doctors to figure out what am always constipated and why i lost weight with no apparent reason add to that muscle twitches and joint pain with itchy skin. my metabolic panel was also normal anyway my doctor is out of town and i have the lab test with me hoping somebody can help me with this test.
I believe this is the same thing they read when they test me, too. It doesn't mean you don't have Celiac. The blood test just isn't very reliable. Go with your symptoms in regard to gluten.
I have many of the same symptoms as you do and I test negative. I also get migraines from gluten and really bad blisters from eczema from gluten. If I stay away from gluten I don't get these giant blisters with the itch that rashes on the heels of my hands like I did before I figured out what was the cause. Minor eczema beats this kind of eczema any day.
I've even had an allergist tell me that he believes me in regard to gluten sensitivity, even if he can't confirm Celiac. This, because a person can have sensitivities that don't test positive for allergy.
I believe you're in the same category a lot of us are in. It's so possible to have Celiac but so hard to prove it. All I know for sure with me is that gluten is still my enemy.
I would recommend the small intestine biopsy test. It's not always accurate either, but it's still better than the blood test. If your doctors are like mine, though, it's like pulling teeth to get them to do this test, too. None of my doctors will do it.
I have read stories of people being sick with the classic diarrhea symptoms and testing negative on all tests, including the small intestine biopsy. However, the symptoms were so bad that the GI doctor had to say that it was Celiac.
Since many Celiacs are prone to arthritis, it is worth mentioning that I've heard of cases of arthritis being the same way. The person has RA but all the tests say she doesn't. However, all one has to do is look at her hands to know. So, her doctor finally said that the SED and ANA blood tests just don't match what is going on with her but concluded that she has RA. I guess years and years down the road the SED and the ANA blood tests did start to confirm RA, but not for the first while. However, it was still the correct diagnosis.
It's actually very possible to still have Celiac but test negative for it.
Well FurballsMom am very confused and anxious to get diagnosed!!! i did every test thats out there nothing is showing that something is wrong with me!! the only test that came back with a bad result was my vitamin D ! the levels were 5.5 where it should be between 30 to 100 ! am not anemic actually my blood is count is fantastic! but i am bloated most of the time and I have gas and I can not get rid of this constipation!!!! thanks to that I have an anal fissure now!!! I am eating fibers a lot!!! and drinking minimum 4 liters of water each day!! the only I could go to the bathroom is with using a laxative called movicol!! i have been on it for 2 weeks now! but none of my doctors figured out why i lost the weight or what is it thats causing my symptoms! they reached the point where they thing thats its all in my head! and am the one causing my illness! i really do not know what to do!
I do understand the frustration, because I experience the same kinds of things you're describing. I was diagnosed with IBS. Some people feel that IBS is a form of Celiac because so many can't tolerate gluten. I think it's a strong possibility, but conventional medicine says this isn't so. Well, good for them, since it's not their colon and gut that is not working so great and ends up in pain! I'm being sarcastic. I am just as frustrated with the medical establishment with this one as you are. I mean, it's so obvious that gluten is a problem even if the tests say it isn't. Well, la de da, right? I mean, after all we do still definitely experience problems if we consume gluten, even if we unknowingly eat gluten, right? I know exactly what you mean about some docs saying it's all in your head because I face this issue with certain doctors myself. It's quite frustrating and sometimes insulting when doctors act this way towards people just because their fancy tests say there is no gluten issue. Some doctors are kind of rude with their bedside manner without actually saying the words "It's all in your head." even though their body language says it.
I totally understand what you mean, because it has been happening to me, too. This, even when I tell the doctors acting this way what I just told you. No way is this gluten intolerance in our heads. After all, with my experience with giant blisters on the heels of my hands that I no longer get after not eating gluten that I was getting before I discovered that gluten was the problem. Before this, I didn't really know what gluten was. And, how 'bout all that deep itching from the same eczema that I no longer get now that I leave gluten alone? How on earth is this physical evidence all in my head? I've told the doubter doctors to just ask my PCP if they doubt my word, because she has seen these blisters for herself and prescribed the ointments that hardly touched the eczema. She has seen these improve after I stopped eating gluten. I mean, I would sign a HIPPA paper just to have the doubters talk to her if they still want to doubt my word. Do they ever offer to do this? No, they just hold to their belief that this gluten issue and my gut issue is all just in my head. Their bedside manner says so even if they don't come right out and say it. I am fortunate that I have three doctors who don't doubt me, but it's still upsetting when I get mistreated like this. So, I know what you mean.
They are really saying it's in our heads and that we are to blame for causing the illness in ourselves. I'm with you on this one. Sometimes I just want to insult them right back and tell them that they are only imagining that they know what they're talking about just because they got that special sheepskin saying they went to med school. They think that if their fancy tests are negative that the patient knows nothing and they start blaming the patient. This is very poor bedside manner. Just because a person is a doctor doesn't give them the right to act so arrogant. And, the truth is medical science really doesn't have all the answers, and an honest doctor will admit not knowing everything. I have a whole lot more respect for the ER doctor who did say he didn't have all the answers when I had to be treated for really bad abdominal pain recently, just to take the top edge off, so I could come home and try what was suggested. It will take a few days, but at least the ER treatment took care of the worst of the pain and it was taken down to a bearable level. Still, I have more respect for this person for admitting to not knowing what more to do with the rest of the belly pain that I hadn't already done at home prior to going in to the ER. This I can deal with better than the arrogance I've had from other ER doctors in the very same hospital's ER.
I find it interesting that you, too, have experience vitamin D deficiency. If I don't supplement my vitamin D, it will plummet again. From what I understand, vitamin D deficiency and other vitamin deficiencies is part of the issues with Celiac as well as several auto immune issues. This tells me a lot, because we have so much in common with our symptoms.
There are a few things you can try besides eliminating gluten. I wouldn't say they are going to resolve the issues, because I have never gotten rid of the constipation completely myself.
If you don't have upper GI symptoms from using psyllium fiber, which you can buy in health food stores here in the States, psyllium can prove helpful, as long as you continue to drink the extra water with the fiber. I can't really use the psyllium myself, because it causes my GERD to burn, even during the couple of times a year I use the PPI medications to control it. It's a separate issue, so I'll leave it at that for now.
Something you might have more access to in Jordan is flax seed meal. It is definitely best if you use flax seed ground up as a meal or flour. Some people use it the same way as they use the psyllium fiber, but you don't have to do that. You can make it more enjoyable to use by just sprinkling the ground up flax seeds over your everyday foods. If you have rice as breakfast, for example, ground flax seed sprinkled over the rice actually has a nice nutty flavor. I like it with chick peas, too. I'm not a vegetarian by any stretch of the imagination, but I like these foods myself, and I found that simply sprinkling the flax seed meal over these foods actually tastes pretty good.
There is something sold here in the States under the brand name of Benefiber called inulin fiber. It is a vegetable fiber. If you can find this in Jordan, make sure you read the ingredient list on the label, because some of the canisters use wheat fiber, which neither one of us wants anything to do with. However, inulin is safe for people needing to avoid gluten. It has little to no flavor of its own, so it's reasonably good with plain old water.
I find that it's tricky to use the correct amount of any of these fibers, because the gut seems to be as picky about getting too much of any of these fibers as it is about not getting enough. I do hope some of these ideas are helpful. I do understand that it's not 100% improvement even if they sort of work, because I'm not getting 100% either, but still improvement nonetheless.
For the pain and cramping in the colon that still comes with the territory, though, you will still need to have a prescription for an antispasmodic medication. You will find two or three different prescriptions for this. Only you will know for sure which one works best for you. One is a generic called Hyocyamine. If this one works for you, wonderful, because this one is at least non-sedating. It doesn't work for me and it's not covered by my insurance anyway. Another is a generic called Dicyclomine. It is sedating, but this is the one that works best for me when I have the colon pain caused by spasming. The interesting thing of these medications is that they help people with the opposite issues that we have with the diarrhea issues, too.
I hope you get some relief and some answers, too. Do keep us posted. Anything that works well for you just might help someone else.
thank you so much for every little detail you wrote in your last post! I will make sure to take your advice and hope that things will improve!. I am already on Benefiber its Gluten free thats what there AD says. I am also suffering from GRED!! and my burps have a rotted egg smell in them, this is all really frustrating now am dealing with my anal fissure which I guess will require surgery because the meds that the doctor gave me did not do a thing. I will also start myself on a gluten free diet and hope to GOD that things will improve even if it was a bit! I am also on Vitamin D supplement I must keep taking it for 3 months. anyway lets keep the line of communication open between us and inform each other how things are going.
You're very welcome. I'm glad that at least some of this information is helpful. It sounds like we're experiencing quite a lot of the same kinds of things. That's why I like this website. We can help each other even in small ways. I do understand about the anal fissures, too. I haven't gotten to the point you have--yet, but it's something that I'm well familiar with, since the constipation is the cause of this.
If you have access to natural vitamin D3 at a health food store, I would still buy that. It is such a small amount of money for something you need. The prescription is vitamin D2. I had to take the prescription plus 2,000 iu vitamin D3 everyday for 6 months before my vitamin D levels were up high enough. Also, a minimum of 400 mg of magnesium daily in order to get the benefits of the vitamin D. If you're like me with the magnesium, you will need more than the 400 mg, which is rather low when considering the fact that you are having similar bowel troubles as mine. I would think you need a minimum of 1,000 mg of magnesium, if not more. But, definitely take the 400 mg minimum in order to fully benefit from the vitamin D2. These days, just to maintain my vitamin D, I take 5,000 iu of vitamin D3. I know it sounds like a lot to many people, but the RDA for vitamin D3 is actually too low.
Also, If you're taking a PPI for the GERD, that by itself will cause vitamin malabsorption, so the 5,000 iu of vitamin D3 is definitely not too much when taking this into consideration.
Since many on this forum will likely benefit from vitamin D information, I recommend two very useful websites for valuable information about vitamin D and the correct amount for people to take, especially people with chronic conditions, such as Celiac. One site is the Vitamin D Council's website. This is where I learned the enormous value of taking magnesium with the vitamin D. And, this information is true. It's what finally got my vitamin D to where it's supposed to be at. Many people are also deficient in magnesium. The other website is mercola.com and use his search engine within the site about vitamin D. He is actually the one who recommended signing up for the Vitamin D Council's newsletters. Both resources suggest a minimum of 5,000 iu vitamin D3 for people with chronic conditions. For otherwise healthy people, a maintenance dose of vitamin D3 might be as low as 2,000 iu vitamin D3. Definitely not the low amount that the FDA finally upped it to. The FDA still recommends too low of a dosage for those able to take the oral vitamin D3. I just know how important it is to take care of vitamin D deficiency, since this almost killed me.
There are people who can't tolerate taking vitamin D at this dosage, but it doesn't sound like you are in this category. You sound like me and able to take oral vitamin D just fine. It's important FYI because many with auto immune issues just don't tolerate oral vitamin D very well. I just wanted to acknowledge this for the people who don't tolerate oral vitamin D.
your blood tests really do not suggest celiac disease. gluten antibodies are very non-specific---i just learned this from our ped gi last week because my gliadin antibodies were flagged as high. GERD can cause raised gluten antibodies---i don't know why this is so, but i trust this doctor an awful lot---i think he is one of the smartest doctors i have ever met. he has helped us through infant reflux requiring a fundoplication, esophageal thrush, failure to thrive, 3 children with celiac disease and two daughters with eating disorders.
my girls were diagnosed when they were first really starting to recognize how prevalent celiac disease is--but they were not yet acknowledging gluten sensitivity without celiac. i have seen a turn around in that area. the medical establishment is now recognizing that there are alot of people that are gluten sensitive, but do not have celiac. you're not going to get the small intestinal damage that celiac causes--or your Ttg levels would be high, but you are still going to feel like hell when you eat gluten.
also, it really irritates me when the docs say that an intestinal biopsy is the "gold standard" for diagnosing celiac----because an allergy to milk protein can cause the same kind of intestinal damage that celiac disease does. also, taking alot of NSAIDs can cause damage that looks like celiac in teh duodenal bulb------i learned that one last year when i had a scope to dilate my esophagus and they tried to tell me i had celiac disease. i did a little research and got my Ttg levels checked because i know i am DQ2 positive. my Ttg was normal, and the scope i had this year showed no damage that looked like celiac----and i haven't given up gluten.
if you feel better going gluten free, i'd do it. you might even try giving up dairy products for a little while and see if that helps, too. i keep thinking i am goint to do both of those, but can't seem to get myself to do it---and we already cook all of our meals gluten free---it's the gluten snacks i haven't been able to give up yet---or the dairy.
I agree about how irritating it is with the blood test and the intestinal biopsy being the only "gold standard" for diagnosing Celiac. I have read so many stories about people who went through the mill of testing negative for years, but having all these symptoms. Finally, doctors would recognize that the person has Celiac, after the person suffered for years and years and years.
But, I also find it irritating that there are still doctors who still think that going gluten free is some kind of fad diet and that gluten intolerance is a figment of someone's imagination just because their fancy blood test says that the person tests negative for even gluten intolerance. They should give the person credit for knowing how the person feels if the person feels like hell when eating gluten. Even the allergist will recognize that a person can have sensitivities to all sorts of foods but test negative for having what is referred to as a "true" allergy. So, why some doctors act all pious and dismissive to people who test negative for having any gluten intolerance or Celiac when the person tells them that they feel like hell when eating gluten is beyond me. I think they just don't want to be wrong, so they feel like it's okay to infer that people who test negative for gluten intolerance or Celiac are "crazy". It's poor bedside manner, so they need to stop the attitude.
Well, tried a gluten free diet but nothing has changed not at all,m am the same I am in fact I am worse. My Doctor gave me Asacol since I had a non specific colitis since antibiotics did not work. anyway i got some lab results back today am not anemic my hemoglobin levels are at 15.2 ( the tests were done in the early morning) plus my liver functions and my kidney functions are fine I have a slightly raised TSH levels and normal free t4. my fasting blood levels are 92 and Pancreatic enzymes are fine as well. My doctor is suggesting that I take my meds for 2 - 3 weeks and if I did not get better he is going to order an abdominal ct.
Yeah, I'm not sure why it would be worse. I feel better without gluten, and I know going gluten free isn't harmful. If your TSH levels are raised, they definitely need to keep monitoring the thyroid. Thankfully, the glucose is normal and the pancreatic enzymes are normal at a fasting level. Colitis is definitely a different reason for the colon issues, though, than Celiac. It is a different animal, so to speak. Definitely just as serious as someone who definitely has been diagnosed with Celiac who has a flare up. What you're dealing with sounds a lot more like ulcerative colitis. I'm sure diet has something to do with flare ups, but I know less about colitis than I do Celiac. I have family members with Celiac and gluten intolerance, so I'm much more familiar with Celiac and gluten intolerance. Perhaps gluten isn't the actual problem with colitis for you?
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