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Need Help Understanding Test Results
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8 posts in this topic

My daughter is 15 and has been having extremely severe pain on the right side up under her rib cage and along her shoulder blade on same side. She has had tons of ultrasounds and xrays and a hida scan to rule out gall bladder. She has also been nauseated and is underweight. Finally, she had an endoscopy done done Oct 4th and tons of bloodwork. The DR visibly saw and I qoute "severe blunting of villi in duodenum and bulb". The actual biopsy came back negative as well as all the other bloodwork EXCEPT DQ2. That was positive. Does she have Celiac or not???? DR says no. I also have thyroid disease and sjogrens disease. With me having two autoimmune diseases, I very well could have an IGA deficiency. Could my daughter also have this deficiency which would make her bloodwork a false-negative? Thanks in advance for your help!!!!

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She certainly could have Celiac Disease.

Do you have her Celiac Antibody Blood test results? If you post them here we can help interpret them - same goes for the biopsy report - it is helpful to know how many samples were taken and any language used to describe them.

Have you been tested for Celiac Disease? It is genetic, tends to run with other AIs and does not always present with gastro symptoms. Your daughter received the DQ2 gene from either you or her father.

Full Celiac Blood Panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Also, low vitamins/minerals can indicate your daughter is not absorbing nutrients properly - another indicator of Celiac Disease. So you might want to make sure these were checked:

Bs, D, K, Iron, Ferritin, Copper and Zinc

Good Luck to you and your daughter!

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No, I have not been tested yet. I will be in the near future. I do know that they took one biopsy from her stomach to rule out h pylori and only two!!!!! from her duodenum. That realy shocked me especially with him saying severe blunting. No, I dont have any of the numbers on the blood tests, but I do know that she didnt get the total serum or the deamidated gliadin. I am also worried that she only weighs 102 and should weigh about 125. This is just so frustrating!

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Yes, Celaic testing can be incredibly frustrating. It is good that you are questioning her results - far too many are told that they do not have Celiac Disease only to cause far more damage to their health.

I would make sure she gets the rest of the blood tests - your primary should be able to order them - then remove all gluten from her diet for at least three months (six would be better) as the complete elimination of gluten is often the best test. 15 is a tough age...some teens don't want to remove gluten, while others like your daughter are often ready to see if a dietary change can make them feel better.

Get yourself tested too and then join your daughter in the gluten-free trial - removing gluten may improve both your Thyroid and Sjogren's symptoms.

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since the doc said no celiac, what the "heck" did he say caused the blunting?????

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since the doc said no celiac, what the "heck" did he say caused the blunting?????

My point exactly!! Also, no h pylori was found, no ulcers...... I am going crazy and confused.
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You can have the slides reevaluated for free somewhere else. I can't remember where but maybe someone here can help. My daughters biopsy showed "simplification" and didnt use the word blunt. Make sure you get the report and then I'd send it to a celiac center for a 2nd opinion since he saw it!!!

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Severe blunting but no explanation sounds very odd to me. Definitely needs more investigation.

Good luck with the detective work

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    • You already have an autoimmune condition which does put you at a higher likelihood of developing other conditions in the future, not necessarily celiac.  At any rate, I've been reading reports-- both research articles and anecdotal experiences from AI patients-- linking a gluten free diet with relief of symptoms, particularly a lessening of joint and muscle pain in those with RA, FMS, Lupus, and Chronic Fatigue.  So my point is, even if you don't have celiac disease, if being on a gluten free diet helps you, then stay on it.  As for the digestive issues, it may be worth seeing a GI for.  Lots of things can cause tummy troubles, not just celiac disease.
    • It is absolutely possible for non-Celiac gluten intolerance and/or gluten sensitivity to cause extreme symptoms. The difference between those and Celiac is that Celiac will cause actual small intestinal damage to the villi, while NCGI/gluten sensitivity can have extreme symptoms, there is no damage to the small intestine.  Other causes of bloating can be SIBO or small intestinal bacterial overgrowth.  The title pretty much says it all and you need antibiotics to help combat that. Basically, your small intestine's bacteria is out of whack and you have more bad bacteria than good. I know there is a test but have no experience with this. You may want to google it and read up on it and maybe ask a specialist about it too?  This is something they should be testing for anyway to figure out what is going on.  You could also have food allergies, as opposed to an intolerance like Celiac.  You can see why this is so hard to figure out sometimes! Are you sure you are completely gluten free?  This diet has a big learning curve and cross contamination is important.  Please take a look, if you already have not, at this link.  It was written by a previous member of the forum and although it is a bit lengthy, it is what you need to know about following the diet and living gluten free successfully. She did a very good job on it!  Even tiny amounts in your diet can still cause symptoms. http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/ Have you been tested for vitamin deficiencies or anemia?  These could offer a clue to see whether you are malnourished or not. Many people with celiac have both deficiencies and anemia.  Between testing for these and genetic testing to see if you carry a Celiac gene might help you to rule it out if you cannot have a scope done.  But you do remember that you need to be eating gluten for the scope? 
    • Celiac disease is a tricky rascal. Just when you think you've got it under control, it sneaks up and manifests into new and often unexpected problems. At least, this is what we have found over the last decade. From contacts with others who have Celiac disease, we know we're not alone. I'm in my early thirties and find that sometimes my body acts more like that of an old man's. View the full article
    • Thank you, Gemini.   Is it possible for non-celiac gluten sensitivity or intolerance to have this severe symptoms?
      I'm on gluten free diet two weeks now and no change... What are other causes of these symptoms beside food?
    • I am trying to decipher the test and it looks to me like the Total IgA is fine.  Your number appears to be in the middle of the reference range, which would be sufficient IgA for testing.  I am in America so your country's testing is a bit different from here....I really hope I got that right!  If you have severe enough symptoms of a GI problem, some doctors here would move onto a biopsy even with negative blood results.  I think if you cannot get a full Celiac panel done, then a scope with biopsy should come next. Severe bloating has a cause and they need to rule out a food problem. There can be other causes but food is usually a big trigger. Yes, keep us updated!  We are here to help.
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