Does this sound like it could be Celiac?

[Ae.nails96]

New here! In short, I’m a 22yo female with chronic nausea/vomiting, loss of appetite, painful diarrhea, 90+ pound weightloss in a bit over a year, tingly hands/feet, awful fatigue, and stomach pains with a history of anxiety/depression dating back to childhood, but absolutly no other previous conditions. 

I think there’s a possibility I have celiac, but my doctors don’t seem to be too helpful communicating with me the meaning of the tests results. They pretty much just said “hmmmm...it could be, but maybe not” which to me is a lame answer. I was hoping someone could take a look at these results and interprete if it sounds like it could be Celiac or not. 

igA- 595 mg/dL *went up from 555 three weeks ago if that means anything, they accidentally ordered the same test twice 

Ttg- 1 U/mL

HLA DQ2- positive

HLA DQ8- negative

Endoscopy/colonoscopy biopsies-

Duodenal mucosa with patchy mildly increased intraepithealial lymphocytes, preserved villous architecture 

Gastric oxyntic mucosa with focal mild chronic inflammation

focal active colitis in right colon

*I don’t know if this is relavent, but my bilirubin is slightly elevated 

I’m still waiting on results from deamidated gliadin peptic antibodies igA igG. I was also wondering if anyone here is a cigarette smoker and if that delayed diagnosis, I read that somewhere, and I do smoke maybe a pack and a half a week as I have been for the last 5 years (symptoms started a year and a half ago).  What do yas think? Should I cut out the gluten? Right now, while I don’t eat a lot, when I do it’s definilty not gluten free. 

 

 

[GFinDC]

Hi,

I'd wait to go gluten-free until you are sure all the testing for celiac disease is completed and the results known.   The reason is that once you go gluten-free the antibodies start to decline and make accurate testing difficult or impossible.  Also, if you have to go back on gluten for testing later, it is sometimes much more painful than before going gluten-free.  What you could do is cut down the amount of gluten you are eating.  A small amount, say a half slice of regular bread is enough to keep the antibodies active for testing.

Something else that might help is going off dairy right now.  Celiac disease interferes with our ability to digest dairy sugar.  That can cause bloating and D and pain.  Usually the ability to digest dairy returns after being gluten-free awhile.

You should also be tested for vitamin levels.  Celiac can make it hard to absorb vitamins and minerals, and fats.  So people may be shorter than average if they have celiac as children.

Vitamin D, and B-12 are some commonly low ones in celiac disease.

And welcome to the  forum!

[Ae.nails96]

Thank you so much for responding!!

I’ll definitely wait to go gluten free till we get the blood work all done. I never thought about declining antibodies.

I’ve had very low vitamin D since before I got sick, primary doctor said to take a supplement, but I never really worried about it. I’m curious if it’s lower now, but I haven’t had any vitamin tests. My mom has always been low in vitamin D and B-12, I don’t know if it’s hereditary? 

Thank you again for your input, I really appreciate it! 

[Ennis-TX]

20 hours ago, Ae.nails96 said:

Thank you so much for responding!!

I’ll definitely wait to go gluten free till we get the blood work all done. I never thought about declining antibodies.

I’ve had very low vitamin D since before I got sick, primary doctor said to take a supplement, but I never really worried about it. I’m curious if it’s lower now, but I haven’t had any vitamin tests. My mom has always been low in vitamin D and B-12, I don’t know if it’s hereditary? 

Thank you again for your input, I really appreciate it! 

Well you have one of the genes for it and Celiac is genetic.  (These two are some of the genes known to cause celiac, but 20% of the population have the genes but only 1% develop the disease but it can become active at anytime in life at which point it is life long)

HLA DQ2- positive

HLA DQ8- negative

She might do well to get tested also.
The test says preserved villous architecture  but makes me question how many biopsies they took. They are taking small samples of a organ with the surface area of a tennis court. Do you have reference ranges for those test and complete results? Might help get a better picture.

Going on to further with the B-vitamins etc. Magnesium is also another issues and the combination of deficiency of these will lead to anxiety, stress, numbness, nerve issues, tingling, etc. Going ahead and supplementing for now should alleviate some of the symptoms. Liquid Health Energy & Stress (vitacost), Liquid Health D3, and depending on needs either Doctors Best Magnesium or Natural Vitality (Doctors best is a glycenate and good if you have loose stools, if you have constipation then Natural Vitality as it is a Magnesium Citrate and works a bit like a laxative)

[JaneTX2]

I saw the phrase "mildly increased intraepithealial lymphocytes", though it was noticed in the duodenum, it is used to diagnosis microscopic lymphocytic colitis when detected in the colon.  Lymphocyte infiltration, caused by an immune system reaction, can happen anywhere throughout the GI tract and cause any kind of problem related to that portion of the GI tract.  Seems treatment can be trial and error, finding what is causing the immune system to react and finding the medicines that can calm it down again.  Don't just focus on gluten, many other types of foods can cause the immune system to react, and maybe start with an elimination diet.