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Need Help Understanding Test Results

hokiewife

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hokiewife Newbie
hokiewife
Posted

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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GottaSki Mentor
GottaSki
Posted

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!

hokiewife Newbie
hokiewife
Posted
  • Author

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!

GottaSki Mentor
GottaSki
Posted

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.

frieze Community Regular
frieze
Posted

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

hokiewife Newbie
hokiewife
Posted
  • Author

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.
1974girl Enthusiast
1974girl
Posted

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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Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

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

Good luck with the detective work

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Small Bowel Resection 12 inches

      By Ello · Posted

      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

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