Could this me celiac disease

I have a friend who has been dealing with the following symptoms.  Fatigue, stomach problems, open sores in her mouth (get better when she eats gluten free worse when she does not) and weight loss.  Can only eat meat and veggies or else she gets the open sores.  She has been tested for celiac but test came back negative for a certain gene, but my question is can you still have celiac even though you test negative?  Thank you  

[skky137]

Absolutely! Since she has been eating gluten free, it may not show properly on the blood tests! Believe me, I guarantee she does have an allergy! She needs to STAY AWAY from;
wheat, barely, rye, oats (still investigating) and malted drinks, canned soups, sauces, gravies, basically a lot of foods! I have been dealing with this since June 2010, and JUST diagnosed over Christmas, I have been fatally ill, too many 'quack' docs. But, finally I found one that diagnosed me, and I had a bunch of biopsies yesterday! So, if she wants to keep the weight she has, and not become manlnurished and healthy, tell her to RESEARCH and STAY AWAY from ANYTHING that contains gluten. I bet she feels like she has the flu 24/7, that's what I felt, and eventually I restricted everything, and here I am now! SO, please stress that she needs to stay on a gluten free diet, otherwise it'll only get worse! Take Care :)

[snowyday479]

THank you so much.  I really feel she has celiac even though the doctors say no.  You have confirmed my feelings.  I will let her know.  She is also going to see an allergist but I really feel that celiac is her problem.  She has been to numerous docs all of whom cannot diagnose her properly.  Can not tell you all the tests she  has had.  

[spiralz06]

Tests can be wrong.  As long as she feels better eating gluten free foods, she can do that!  She doesn't need a doctor to tell her.  Unless she needs special dietary accommodations  at a college/university, she may need to have the biopsy done.  But even those are iffy.  Not enough tissue taken, the lab may do it wrong:  a host of mistakes.  

Some people are tested for years while suffering.  Go gluten free.  No human can fully digest gluten proteins.  Some are more susceptible.

She should get onto a celiac information site and find out what blood tests should be done.  She may be anemic.  She may not be absorbing some vitamins and nutrients.  

[FurballsMom]

I have a handful of doctors who I wish would listen to me when I tell them exactly what you just said.  They act as if I couldn't possibly know what I'm talking about when I say that I feel better without eating gluten even if their blood test says I'm not so much as gluten intolerant.  They don't listen to me when I tell them how I feel every time I start doubting myself and start eating a bit of gluten.  I then pay the price every time this happens to me.  It's maddening, because they WON'T do the biopsy.  Then, like you said, so much can go wrong with the testing process.  I feel I am getting a false negative, but certain doctors refuse to listen.

I think it's dangerous for doctors to tell their patients to keep consuming gluten 'til the test results of some sort or another confirm that they have Celiac, because it is still very hard to test and there are so many false negatives.  The longer someone with Celiac eats gluten the more damage there is.  These same doctors assume that it's too difficult for some of us to continue to eat gluten free.  It can be, that's true.  But, it's not impossible.  There are even helpful websites that have useful gluten free recipes.  These are particularly good for people who miss eating bakery items.  The funny thing is, I don't miss bakery items most of the time.  I don't care for the commercial gluten free rice bread that is out there.  It's alright, and on rare occasions I will still eat it.  But, I'm fine with planning ahead a little bit and making my own foods.  There are gluten and dairy free casseroles that can be made that are great.  Quinoa or millet can be used in the place of couscous very easily in many recipes.  And, if one has a casein cross reaction allergy, there are many recipes out there that leave out the dairy.  

The funny thing is, I do have supportive doctors.  I found out why my neurologist is supportive of me and why GI doctors should be more supportive.  Two words:  Tyramine Intolerance.  If the doctors who doubt me about gluten intolerance because they put all their eggs in one basket with their less than accurate blood test, they should still be supportive about Tyramine Intolerance.  People with Tyramine Intolerance also can't tolerate gluten and dairy.  Folks in the GI communities should definitely find out about this Tyramine Intolerance.  The website I read explained that people with migraines and IBS are typically prone to Tyramine Intolerance.  Many from the IBS community are also here in the Celiac community because they're looking for answers.  The thing is, regardless of what the problem is, I don't tolerate gluten and dairy either one.  Whether these people want to believe it's Celiac or not, and whether their fancy blood test says I'm negative for even gluten intolerance or not, they should still support my decision to go gluten free instead of acting like they're superior to me and that I couldn't possibly know how gluten affects my own body.

I so agree with you about how no human can fully digest gluten proteins and that some of us are more susceptible than others are.  And, that all those fancy tests aren't always accurate.  I do get tired of the ER docs in my local hospital putting too much faith in that blood test, because then I get attitude from them.  I was once hospitalized for unexplained renal failure.  Because no one believed me, I had to eat the gluten the whole time I was in there.  I guess these people assume that all Celiacs have chronic diarrhea if they eat gluten.  That's not what I've learned at all from this forum.  I've also learned that many with IBS actually have Celiac.  And, that many have the opposite problem from diarrhea, which is usually what happens to me.  I was so impacted from having to eat all that gluten and dairy that it took two weeks before I had a bowel movement.  These guys wanted to attribute this to being bed-ridden for five days.  Wait a minute.  Hold the phone.  As soon as I could get them to take those things off of my legs, I was getting up and using the restroom on my own and several times a day, I would walk the hallway with the IV drip.  I was moving around more than they gave me credit for.  I had to buy OTC enema in order to get any relief.

I've learned on the Tyramine Intolerance site I was reading that even IBS patients can have anemia caused by malabsorption.  I know that I am iron deficient anemic more often than not, so I know this can happen whether someone has diarrhea or constipation or both.  The odd thing, too, is that some in alternative medicine believe that IBS is actually a form of Celiac, even if conventional medicine doesn't recognize this.

I so agree with you that it is better to just go gluten free, regardless of what all those tests say.  Damage can be done by continuing to eat gluten, thinking one is negative for gluten intolerance or Celiac either one.  When someone knows they are affected negatively by eating gluten, regardless of what those tests say, it is definitely a smarter idea to listen to one's body and stop eating the gluten.

There's no way I'll ever be able to get the DNA tests done, but gluten issues run in my immediate family.  It seems like this should be enough to get certain doctors to at least listen to me.  My brother has the less severe positive gluten intolerance and so does his daughter, but his son has confirmed Celiac.  I think I tested negative for gluten sensitivity because I don't eat gluten.  I'm guessing that intentionally eating gluten for a whole month before getting the last test must not have been long enough to have sufficient antibodies for the tests to find them.  Since I can't get anyone to agree to do the biopsy, no one is ever going to do the DNA testing.  If doctors won't write up the paperwork, the insurance isn't going to cover it.

I wonder just how much I would weigh and how much damage I would have internally and how many eczema flares I would have right now if I hadn't been listening to my body in spite of these doctors who choose to doubt me and even cause me to self doubt from time to time?  I'm sure I would be huge, have type 2 diabetes, have confirmed issues beyond IBS and who knows what all else.

I wonder where I would be right now if someone hadn't thought to have me ask my doctor to get my vitamin D tested, along with the usual suspects?  Probably dead.

I'm telling my story to say that I definitely agree with you and to encourage the original poster to get the nutrient panel done.  Make sure you get the vitamin D tested.  You usually have to ask for this one specifically.  I'm guessing this is because insurance carriers gripe and complain about having to pay for it.  But, you need to find out for sure, so get that test done.

[skky137]

Well, I had my biopsies done, and its confirmed! I have Celiac D. It's acute, long-term chronic. He said that there were signs of old and new inflamation (inflammation), and that I need to stay away from anything carrying gluten! But my Vit D, protein and Vit B12 levels are low, go figure! So, now I pretty much need to start over. And here I have been eating Kix, and that is a BIG NO NO! I felt icky after I would eat them, but I thought that I was just paranoid. A person develops a fear of food itself dealing with this disease, especially if it's misdiagnosed! So, the nurse called me yesterday and gave me websites, emails, and support groups, and I plan in seeking any help that I can get! Good luck to you all, and YOU NEED TO PUSH FOR ANY TESTING! It's your body, and you only live ONCE! No one can tell you how you feel, so don't let them get away with murder!

[skky137]

Well, I had my biopsies done, and its confirmed! I have Celiac D. It's acute, long-term chronic. He said that there were signs of old and new inflamation (inflammation), and that I need to stay away from anything carrying gluten! But my Vit D, protein and Vit B12 levels are low, go figure! So, now I pretty much need to start over. And here I have been eating Kix, and that is a BIG NO NO! I felt icky after I would eat them, but I thought that I was just paranoid. A person develops a fear of food itself dealing with this disease, especially if it's misdiagnosed! So, the nurse called me yesterday and gave me websites, emails, and support groups, and I plan in seeking any help that I can get! Good luck to you all, and YOU NEED TO PUSH FOR ANY TESTING! It's your body, and you only live ONCE! No one can tell you how you feel, so don't let them get away with murder!

[skky137]

Well, I had my biopsies done, and its confirmed! I have Celiac D. It's acute, long-term chronic. He said that there were signs of old and new inflamation (inflammation), and that I need to stay away from anything carrying gluten! But my Vit D, protein and Vit B12 levels are low, go figure! So, now I pretty much need to start over. And here I have been eating Kix, and that is a BIG NO NO! I felt icky after I would eat them, but I thought that I was just paranoid. A person develops a fear of food itself dealing with this disease, especially if it's misdiagnosed! So, the nurse called me yesterday and gave me websites, emails, and support groups, and I plan in seeking any help that I can get! Good luck to you all, and YOU NEED TO PUSH FOR ANY TESTING! It's your body, and you only live ONCE! No one can tell you how you feel, so don't let them get away with murder!

[FurballsMom]

I've tried to push for the biopsy many times in the past.  I get nowhere.  I do eat a whole foods gluten free diet at home in spite of the doubters in the medical community, because I know I feel better without the gluten.  I even surprise people who eat the foods that I have cooked from scratch, because it's better than the junk they eat from the convenience foods aisles.  It isn't hard to do, if one plans ahead of time.  Families can do it, too.  I got tired of reading labels, because I could see that the majority of stuff that might be gluten free always had some other ingredient in it that I know I need to avoid because of the other issues I have.

I even had a GI who did the endoscopy.  He confirmed the gastritis and all, but he had promised to go ahead and do the small intestine biopsy but he didn't do it.  The Fentynal used for the test made me feel pretty lousy for a few days, too.  That particular GI no longer works at the clinic I saw him at.  However,  I still get told "No" at every turn, no matter how much I try to push for the test.

But, if I'm ever hospitalized again, I'm in trouble because of the doubters.  The hospital here only have gluten carbs or white rice.  I would have to have friends bring food from home, if I can even get them to cooperate.  It's not asking for much for friends to cooperate, because when one is sick in the hospital one doesn't usually have that big of an appetite anyway.  But, will the hospital allow it, is the other issue to worry about.

I'm going to lay on the message about Tyramine Intolerance, if these people still refuse to believe me about needing to go gluten free.  If they doubt Celiac or gluten intolerance because of the blood tests and wanting to be right, I'm going to drive the point home that I still need to avoid it because of the migraine and the IBS issues, which do have confirmed diagnosis.  I'm going to print out the page from the website for them to read.  They can't test for Tyramine Intolerance, because there is no test.  Everyone has Tyramine in their body.  However, I know which foods bother me, and they're ALL on the list of foods to avoid with Tyramine Intolerance.  I knew about these foods being a problem for me before I knew anything about Tyramine Intolerance.  And, the neurologist who works on their campus doesn't doubt me, because he is the one who told me to read up on Tyramine Intolerance.  Especially when I described which foods bothered the migraines or just made me feel icky.  So, what I'm saying is that it doesn't matter what the fancy blood tests say, because the Tyramine Intolerance issue should be enough to get these guys to cooperate with me and to stop arguing with me about going gluten free.  I do just fine with my diet at home and I rarely eat out, and I know to take my own foods with me if I have to be out anywhere.  I don't understand what the argument is anyway, because it's possible to eat a perfectly healthy and balanced diet that is gluten free and it doesn't have to be as hard as those people make it sound like it is.  Sure, it's hard for some people, but it's just not that hard for me, because I'm already living gluten free.  I don't even like oats, which are questionable for Celiacs unless they say they're certified as gluten free, and I know how the foods with gluten make me feel.  Food banks are hard, because they're as bad as hospitals when it comes to foods with gluten.