Sorry, But Still Not Really Convinced And A Little Concerned

[zus888]

Here's the thing, I keep getting "signs" that I may not have celiac. The biopsy tested positive. Negative transglutaminase, positive IgA gliadin, negative IgG gliadin.

Here's what I just found in a book given to my by my brother, "Healthier Without Wheat" by Dr. Stphen Wangen, The Gluten-Free Doctor:

"The fact that a biopsy reveals villous atrophy may not mean that you have celiac disease. Villous atrophy can be caused by other conditions. There are documented cases of villous atrophy caused by cow's milk allergy, soy allergy, fish intolerance, chicken intolerance, opportunistic infections, tropical sprue, HIV enteropathy, intestinal lymphoma, ulcerative jejunitis, giardiasis, stongyloidiasis, coccidiosis, hookworm disease, leukemia, intestinal carcinoma, kwashiorkor, methotrexate (a pharmaceutical drug), eosinophilic gastroenteritis,...and viral gastroenteritis." [pg. 63-64]

Also,

"Remember, gliadin antibodies are not specific for villous atrophy. Therefore this test cannot be used to test for celiac disease....

"If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance."

Granted, even if gluten-intolerant, I still must adhere to a gluten-free diet. My worry is that there could really be something more serious going on that is being overlooked. I had a recent CT scan and ultrasound that showed inflamed abdominal lymph nodes. They are currently keeping track of it and I will be getting an MRI soon to monitor them. I worry about jumping on the celiac wagon too soon, without considering some of the other possibilities, namely lymphoma or some other carcinoma, especially with having the other indication of something amiss (enlarged lymph nodes).

Anyone have any further insight? I plan to get food allergy tests (through bloodwork) asap, to make sure I don't have any underlying allergies that I am unaware of. Has anyone ever been MISdiagnosed with celiac?

[cahill]

Here's the thing, I keep getting "signs" that I may not have celiac. The biopsy tested positive. Negative transglutaminase, positive IgA gliadin, negative IgG gliadin.

Here's what I just found in a book given to my by my brother, "Healthier Without Wheat" by Dr. Stphen Wangen, The Gluten-Free Doctor:

"The fact that a biopsy reveals villous atrophy may not mean that you have celiac disease. Villous atrophy can be caused by other conditions. There are documented cases of villous atrophy caused by cow's milk allergy, soy allergy, fish intolerance, chicken intolerance, opportunistic infections, tropical sprue, HIV enteropathy, intestinal lymphoma, ulcerative jejunitis, giardiasis, stongyloidiasis, coccidiosis, hookworm disease, leukemia, intestinal carcinoma, kwashiorkor, methotrexate (a pharmaceutical drug), eosinophilic gastroenteritis,...and viral gastroenteritis." [pg. 63-64]

Also,

"Remember, gliadin antibodies are not specific for villous atrophy. Therefore this test cannot be used to test for celiac disease....

"If either your IgA or IgG gliadin antibody test is positive, then you have a strong immune reaction to gluten and thus a gluten intolerance."

Granted, even if gluten-intolerant, I still must adhere to a gluten-free diet. My worry is that there could really be something more serious going on that is being overlooked. I had a recent CT scan and ultrasound that showed inflamed abdominal lymph nodes. They are currently keeping track of it and I will be getting an MRI soon to monitor them. I worry about jumping on the celiac wagon too soon, without considering some of the other possibilities, namely lymphoma or some other carcinoma, especially with having the other indication of something amiss (enlarged lymph nodes).

Anyone have any further insight? I plan to get food allergy tests (through bloodwork) asap, to make sure I don't have any underlying allergies that I am unaware of. Has anyone ever been MISdiagnosed with celiac?

sometimes underlying intolerance do not show up in allergy testing (blood work or skin testing), the only way to find them is thru an elimination / reintroduction diet.

I understand your concern that there may be something else going on,, for some of us there is,,, for me there are multiple intolerances and allergys inaddition to gluten .

Staying gluten free and dairy free will help your villi heal as you eliminate other possible causes of your villi atrophy

[mushroom]

Avoiding gluten is not the only treatment for what ails us, if we have something else ailing us as well. And if avoiding gluten does not help you at all then that is obviously not your problem (or not your only problem). Only you know your body and how it is reacting; we don't, even your doctor doesn't. He can measure things and propose other theories and test for them and rule them in or out based on his findings but as we have found, just because a doctor rules out celiac disease does not mean that we don't have a problem with gluten.

As an example, I would not have improved at all by eliminating gluten if I had continued to drink milk and eat ice cream. I would not have noticed any change in my symptoms. Same goes for corn. It was only because I knew about the dairy and corn beforehand that I knew to eliminate them all. It is possible to have celiac and Crohn's together, or celiac and microscopic colitis, or celiac and thyroid disease and rheumatoid arthritis and diabetes, If you are still having food related symptoms and are not sure whether or not you have other intolerances, a food and symptom diary is a good place to start.

It sounds like your doctor is staying on top of your other symptoms and following through with appropriate testing for other things that might be going on.

"The celiac wagon" as you called it makes frequent stops and you can get on or off at any time that seems appropriate. But if you are feeling better it seems counter productive to get off what I would call the "gluten intolerance" wagon and leave yourself stranded at the gluten stop..

[cassP]

you're very smart to also want to make sure there's nothing else wrong- even if you DO have Celiac... or JUST have Celiac- we should always be vigilant- as we could have any number of issues from our esophagus all the way down- that's why its always a good idea for both scopes.. i was very relieved when my colonoscopy came out clear- and they removed a benign polyp... i imagine an endoscopy in the future would be a good idea as well..

like said above- there are many stops on that Celiac train.. ive had to take digestive aids (enzymes & tinctures)... i had to treat myself for H.Pylori.. and for a while i was taking tinctures & doing Gall Bladder/Liver flushes.

anyways- ALSO- i dont see that you had an Endomysial Antibody test... which REALLY was the ONLY solid positive i had... untill i got DH. my Antigliadin were SOLID NEGATIVE.. and my TTG was very weak.

also know- that avoiding gluten may be indicated for several other autoimmune diseases (as i also have to avoid it for my thyroid antibodies).

hope you figure it all out- and have nothing to worry about

[eatmeat4good]

Mushroom: You are brilliant and you have such a way with words. I have nothing to add but would second what Mushroom said!

[GFinDC]

Food allergy testing is not a bad thing, but it won't tell you about food intolerances. Allergy tests are based on an IgE immune response, vs food intolerances which are an IgA, IgG etc response.

[malstria]

zus888,

I sympathize with your confusion. I was diagnosed with Celiac in 2008 via a biopsy and instructed to go on a gluten-free diet. Its been nearly 4 years to the day and I have had the most interesting development. The other day I reached the point where I couldn't stand waking up from dreams where I'd been eating all those things that I could no longer eat. So, I broke from my diet for the first time in 4 years. I had a rather delicious bit of chocolate cake with icing. Definitely contained wheat. Odd thing: Not a single reaction. No distention, no grumblings stomach, no headache, no brain-fog, no lethargy and no grumpiness. Nothing. So, the next day I ate a couple donuts. Still...nothing.

I have lived the last 4 years on one of the most complicated diets and I'm wondering if it was for nothing. My husband and I believe there may be something else entirely that was wrong. After reading the section you copy/pasted about the other reasons for villi atropy, I am even more convinced the diagnosis I was given was very wrong.

I want to thank you for putting up this information and beginning this thread. Just as some people are seeking to know if they have celiac, I am sure there are some out there who are wondering if their diagnosis is accurate but fear to question it because they trust their doctors. After this, I will always get a second opinion on any major diagnoses and if it's some type of hereditary disease, I will get the genetic testing as well.

I'm setting up an appointment with my PCP to get the genetic testing done and for a referral to a new Gastroenterologist. With any luck, they'll find the actual problem. If they do or don't, I'll be sure to post it here so others have the information.

Best of luck to you and to everyone out there struggling to find out the cause of their discomforts.

Jen