Is My Celiac Diagnosis Wrong?!

[GFLindsey]

My celiac panel came back negative for celiac disease. I was already scheduled for an endoscopy because I had a severe case of gastritis so my GI took a biopsy to test for Celiac anyway. The biopsy came back with elevated levels of lymphocytes (something I just found out that can be attributed to other disorders, etc.). I did have the genetic blood test done and tested positive for DQ2 and DQ8.

Since going gluten free two months ago a lot of my GI symptoms -- specifically diarrhea -- have been much better. I still do not feel good though overall. I have a lot of bloating, indigestion, and stomach pain after eating. Sometimes I get extremely nauseated, but much less frequently. I was attributing all of this to the gastritis and changing 95% of my eating habits, but now that I found out my biopsy results could potentially indicate another possibility I have started to doubt my celiac diagnosis.

So basically the run-down:

Negative panel

Biopsy positive for elevated lymphocytes

Positive for DQ2 and DQ8

Some positive results from the gluten-free diet but still symptomatic

SO any opinions? Should I keep looking for further testing for other issues? I am completely dedicated to this diet, but don't want to be overlooking the possibility that my symptoms could be caused by another disease or disorder.

[sandsurfgirl]

I'm confused. Your siggy says you had a positive biopsy. So now are you saying your biopsy wasn't positive? Are you doubting celiac or do you think you have something in addition to celiac?

[GFinDC]

Well, it sounds like you are saying you feel better and have fewer digestion issues, but still don't feel 100% healthy?

I have been on the diet over 2 years now, and I am just now feeling like I am pretty healthy as of a month ago. The thing that really helped me was getting rid of the soy in my diet. I had cut out most of it a year back but not all.

It seems almost the norm to have additional food intolerances beyond gluten here. So you could start looking for other intolerances and see if that helps.

Also, review your gluten-free diet and double check everything you eat or drink for hidden gluten. Any processed foods are prime suspects to investigate.

[GFLindsey]

I'm confused. Your siggy says you had a positive biopsy. So now are you saying your biopsy wasn't positive? Are you doubting celiac or do you think you have something in addition to celiac?

Yes, well my doctor told me it came back positive for Celiac disease. I just found out that what he really meant was that it was positive for elevated lymphocytes -- or the "early" stages of Celiac. When asked, he told me that heightened levels of lymphocytes can sometimes be indicative other diseases unrelated to Celiac, like microscopic colitis. But based on my genetic testing being positive and the "positive" results of the biopsy, my gi doc is fairly convinced that I do have Celiac.

I am not sure what I think. I am doubting the celiac disease diagnosis because I still feel pretty awful. But am also looking for indications of additional intolerances. In my hopeful moments I like to think I just may need time to adjust to the new diet.

[GFLindsey]

Yes, well my doctor told me it came back positive for Celiac disease. I just found out that what he really meant was that it was positive for elevated lymphocytes -- or the "early" stages of Celiac. When asked, he told me that heightened levels of lymphocytes can sometimes be indicative other diseases unrelated to Celiac, like microscopic colitis. But based on my genetic testing being positive and the "positive" results of the biopsy, my gi doc is fairly convinced that I do have Celiac.

I am not sure what I think. I am doubting the celiac disease diagnosis because I still feel pretty awful. But am also looking for indications of additional intolerances. In my hopeful moments I like to think I just may need time to adjust to the new diet.

Also forgot to mention that my doc said there was no visual indication that my villi were blunted or damaged.

[Lisa]

Lindsey, the diet is a pretty steep learning curve. I can be very complicated in the beginning. Eating out can be a real challenge early on.

Have you checked your med, vitamins, lotions, shampoos, lipsticks. You need a clean toaster, not shared with others with gluten breads.

Dairy can often offer the same symptoms as gluten in the healing stages. It's recommended that you lay off dairy for a a while and then you can slowly re-introduce it again successfully.

Keep a food diary. It can help you pin-point issues.

Read as much as you can from this site...it's a great resource.

[GFpixie]

I'm in a very similar situation. I had a biopsy done and the result (according to the surgeon) were indicative of celiac, blunted villi and lymphocytes. I'd been having severe abdominal pain, nausea, diarrhea, HUGE weight loss for 6 months so this sounded great to me, finally a way to make myself feel better! So I did the IgA and tTG blood tests the next day and then started on gluten-free. WIth in a week or two I was having less symptoms. However my blood tests came back negative. I didn't ever have the genetic testing but I think I will ask my doctor to have this done. I saw a gastroenterologist and he says he isn't convinced it is celiac because of the "modest" damage to my small intestine and the negative blood work. Well I've had a good response to the diet and I read recently in a medical journal that if you have only small-moderate damage to your villi that your bloodwork will often be negative. So now I'm at the point where the doctors have me doing a gluten challenge and I'm not enjoying it, if it starts getting back to the level I was at before I was gluten-free then I will give up, I don't need to have a solid diagnosis to feel ok but otherwise I will redo all the bloodtests but I have a feeling they will just be negative again. I think you just need to do whatever feels best for you, if that's a gluten-free diet then that's what you need, you know your body best! Good luck!

[Takala]

Nope, with that DQ 2 and DQ8, sounds like you're one of us.

A lot of celiac goes undiagnosed or not diagnosed until there is major damage, later in life.

Open Original Shared Link Use This To Link To Spam.com/?Diagnosing-Celiac-Disease-and-Gluten-Sensitivity&id=239028

The most specific tests are tests for Celiac disease endomysial antibodies (EMA) and

tissue transglutaminase antibody (tTG) tests. These two tests are IgA based tests and can be negative if you are deficient in the immunoglobin IgA, which occurs in 10-20% of people with Celiac. When either EMA or tTG are positive Celiac disease is very likely and usually the intestine biopsy is positive. Recent studies indicate that the tTG may only be positive in 40% of true Celiacs when mild degrees of intestine damage are present on biopsy. Seronegative Celiac, meaning the blood tests are negative but the biopsy is positive, may occur in up to 20% of Celiacs.

hmm. not liking the link and I was looking for a quick quote on how blood tests aren't always reliable because I lost my old bookmark from a science journal. okay, try this one

this is a pdf download of a Scientific American article that explains what happens in celiac disease, and it has really good color illustrations

Open Original Shared Link

95% of the people with celiac disease possess either the DQ2 or DQ8 HLA gene, whereas just 30 to 40% of the general population have one of those versions.

You have both? Kewl.

If your gut lining wasn't too chewed up yet, because your biopsy test only showed lymphocytes and not flattened villi, (leaky gut syndrome, the problem with celiacs is that the wheat proteins are getting thru the holey gut lining and then aggravating the immune cells ) maybe your disease was caught very early before your immune system was really cranked up because not that much was getting through. Or, and this is JUST a theory, maybe your immune system was busy doing something else and was giving something else priority instead of trying to "kill" wheat proteins. The British researchers are studying older patients, looking for causes of ataxia, and finding that a good % of them still don't have the antibodies, nor the obvious digestive distress, even when they go ahead and do a biopsy and find the gut lining damage and are finding them to be celiac after all. Open Original Shared Link

Are you still taking the Prilosec (omeprazole) ?

possible side effects

Open Original Shared Link

for awhile, years ago, I was taking some sort of over the counter, used to be a script acid blocker, and I'm one of the lucky few who had some really bizzarro side effects. And nobody could figure this out, until I talked to my optician, who said it could be that. Wise man! Good riddance to that stuff. I chewed a lot of crystalized ginger and took a plain old calcium citrate supplement to help.

You may have some sort of secondary intolerance going on, for example, you may not be able to handle dairy yet. A second common culprit is soy. If you are eating a lot of pre made packaged gluten free baked goods, you may want to cut back on them for awhile and stick to simpler foods, or something like a plain Lundberg rice cake, incase you are reacting poorly to one of the common ingredients in gluten free baking.

[GFLindsey]

Takala - WOW. You are amazing. That is some really good information - especially love the journal article with all the pretty celiac pictures! Haha, but seriously it was very informative. Thanks for taking the time to dig that stuff up.

I am going to simplify my diet for a few weeks and try and focus on whole, unprocessed foods for the most part and see if it helps. Also I started a food journal and have been noting my symptoms as I go along. So we will see! After a few days of doing this, I feel significantly better. I'd been eating a ton of gluten-free specialty products because every friend, family member and co-worker has been buying me treats and breads and stuff. So time to put that in the freezer for now!

I am not on Prilosec. I took it for 4 days and was worse off than ever before. I reacted really badly to it and my gastritis got extremely irritated. Now, I am prescribed Kapidex and have been taking that for about 5 weeks. I'll have to check in on the side effects again to cross check them with my symptoms.

Thanks to everyone for helping me to think through this situation! You all are wonderful. Truly.

[sandsurfgirl]

Takala - WOW. You are amazing. That is some really good information - especially love the journal article with all the pretty celiac pictures! Haha, but seriously it was very informative. Thanks for taking the time to dig that stuff up.

I am going to simplify my diet for a few weeks and try and focus on whole, unprocessed foods for the most part and see if it helps. Also I started a food journal and have been noting my symptoms as I go along. So we will see! After a few days of doing this, I feel significantly better. I'd been eating a ton of gluten-free specialty products because every friend, family member and co-worker has been buying me treats and breads and stuff. So time to put that in the freezer for now!

I am not on Prilosec. I took it for 4 days and was worse off than ever before. I reacted really badly to it and my gastritis got extremely irritated. Now, I am prescribed Kapidex and have been taking that for about 5 weeks. I'll have to check in on the side effects again to cross check them with my symptoms.

Thanks to everyone for helping me to think through this situation! You all are wonderful. Truly.

I'm glad you are going to keep trying. I wish so badly somebody would have tried to figure out what was wrong with me in my early 20's but the docs could care less and all they said was, I'm not sure what's wrong with you. YOu have a sensitive stomache. UGH.

I could not eat any complicated foods like gluten free breads and such for about 5 weeks. Even now I can't do tapioca, which is in lots of gluten free stuff. I was also reacting to xanthan gum at first but thankfully that went away. At first I bought all these gluten-free replacements and went nuts and it made me WAY sicker!! When I cut that stuff I started improving. Now I can eat some of it, but I have to be careful of ingredients.

Also I resisted the cosmetics thing, but when I got rid of gluten in my products it made a huge difference right away. H20 Plus has great skincare I've used for years, and most of it is gluten free so that I didnt' have to change. Matrix has some gluten free hair products, too. Bath and Body Works doesn't put gluten ingredients in many of their soaps. Most of them won't say they are gluten free because of lawsuits, but they don't contain gluten ingredients so that's good for me.

I could eat brown rice pasta, but everything else had to be unprocessed. Thankfully I am able to eat corn so I had corn tortillas. I'm glad that early on a friend on here, who I've become friends with in real life, got on my case about simplifying my diet.

I cut out soy, and then challenged it a few days ago. I got horrible stomache pain like a knife was being twisted in there. My sinuses swelled up really badly too. So soy is out for me right now. I also had cut dairy, but I recently tried cheese and I can eat a little bit of it.

Coming from my perspective of being diagnosed at 40, I say give it ALL you have with the gluten free diet and celiac diagnosis, because it's looking like that's what you have, and if you stray the consequences can be bad.

[Reba32]

when I went gluten free, I felt improvement almost immediately, however I didn't feel entirely "better" for a couple of months (like really recently!). Whether that was from minor cross contamination or the healing process, or a combination I don't know.

If there is damage to your intestine, it will take a while to heal. And you may have secondary food intolerances like dairy, soy, corn, preservatives etc etc etc...and they can give similar GI symptoms as Celiac.

If you have a positive diagnosis, go with that. If your symptoms continue, you may want to test for other food intolerances, or eliminate the common ones and see if they are the culprit.

[oceangirl]

Many don't get all the bugs out for a couple of years (me!) As Lisa said, there is a ridiculous learning curve with this disease and this diet. It seems some people can simply cut out gluten, replace it with all the replacement items and merrily go along; however, that does not seem to be the norm!

I am over 5 years in, eat almost NO processed food, NEVER eat out, have a gluten free house (11 pets, too)and cook all my food from whole ingredients and STILL get sick sometimes. It can be difficult to pinpoint the culprit. A food log with symptoms is essential; mine is over 5 years old and has helped me with many mysterious glutenings. Other times, I never figure out what it was that made me sick. Oh, yes, I am also one of those "super sensitives".

Patience and perseverance are key.

Feel better,

lisa