So Frustrated Test Results Help

[bekkaz]

I am so frustrated and confused.  I don’t know if I have a gluten intolerance or possibly dairy or something else?!?  I have had tons of symptoms I won’t go into all of them but as far back as 12 I can remember my stomach swelling way up after I would eat.  This past year I got extremely sick, I lost like 30 lbs in a month’s time.  I was 5’7 and 155 to begin with, my lowest weight was 119.  I ended up having my gallbladder removed, they thought it was that.  I didn’t get better.  I had two upper endoscopys and a colonoscopy.  They found erosive gastritis in my first endoscopy.  My blood test for celiac, negative.  I had two done.  Both negative.  On my second endoscopy they found mildly elevated intraepithelial lymphocytes  with normal vili architecture.  I will also say that during the past two years anytime I had my blood work drawn, I would show elevated WBC, they couldn’t figure out why.  It was always elevated with Lymphocyctes and Neutrophils.  The GI Dr. that did my second endoscopy came out and told my Mom that everything looked fine, then we got a letter about two weeks later talking about the elevated intraepithelial lymphocytes.  I had been so sick that I decided to go to Mayo clinic, only problem was my INS. Didn’t cover mayo, so I paid like 900.00 out of pocket just to consult and meet with one of their GI Drs.  That GI Dr. told me he would work with my GI here.  I called the Mayo Dr. and let him know about the lab results stating elevated intraepithelial lymphocytes.  He told me that is a huge marker for celiac disease and to stop eating gluten.  My regular family Dr. said I am not expert but from everything I know these test results are a big marker for celiac, stop eating gluten.  However, the GI Dr. will not diagnose me with celiac.  In my other testing we found that I am very vitamin D deficient and I am also not absorbing fats, they have no idea why I am having fat malabsorbtion issues.  While I was so sick I was begging them to take some IGG testing for food intolerance stuff.  Some of the prick tests came back showing Soy, Dairy, Chicken, Egg.  That was on my back I had it done 6 months after on my arm, and didn’t react to anything the same.  Except dust!  I also had a blood draw done for an IGE (I think IGE panel) that test came back showing 15x higher than normal for cow’s milk, and also for egg.  I was off gluten for a while, my stomach was flat.  I have been back on gluten and get the big D. usually every day.  I also get very dizzy spells at times, and have actually passed out. I have had a positive stool test for gluten done by Enterolab.  I know many people on here do not vaildaet that testing.  I have pain in my upper spine so bad that I wonder if I am in the beginning stages of Osteoporosis.  I have had problems with my teeth this year, and needed a root canal.  I just got really frustrated trying to know for sure if I was celiac or not…so I decided to ask/beg for the Gene testing.  The GI Dr. who I am not at all impressed with (who told me everything was good when it wasn’t before) he ordered the gene testing this week.  They just told me over the phone that the Dr. read the results and I DO NOT have the gene’s possible for celiac.  I am so frustrated.  I thought for sure I would have these genes and I could put this to rest in my mind once and for all.  So now, I am back to the drawing board.  Is this a gluten problem a dairy problem or a candida problem.  Does anyone know if a dairy intolerance can create elevated intraepithelial lymphocytes in upper GI?

[Cary]

I am sorry you are not getting the corner piece to your health puzzle.  I was extremely similar, except that I didn't test til I got off gluten, tried to get back on gluten, but maybe a month wasn't long enough.  Also, I had genetic testing and it was definitely in my genetic makeup.  Also, recently I found out my grandmother did not die of leukemia; it was lymphoma. 

 

My surgeon (gallbladder) didn't care what my tests said because when I got off gluten my symptoms dramatically improved, including new symptoms of erythema nodosum, migraines.  Malaise improved with magnesium, iron, vitamin B (shots), calcium, vitamin D. 

 

Don't take mag and calcium at the same time.  Mag in a.m. and calcium at night.  You can take probiotics or prebiotics.  I can't handle nuts or dairy.  Always had headaches and migraines as a child, plus Raynaud's, rashes, probably DH about  a year before diagnosis of my gallbladder.  I never showed this to a doctor.  I was so sick at that time I was a complete hermit, working at home, sleeping my days away. 

[nvsmom]

It's frustrating...Hang in there.

 

Withe the gene tests, I recently read in Dangerous Grains that the DQ2 gene is in only 90% of celiac and that the DQ8 gene is only in  94% of celiacs (I think those were the numbers). That means that it is possible for approximately 5-10% of celiacs to not have the "required" genes; in fact I think there are one or two of our celiac forum members who have had that experience.

 

There are also more than a few members who have had gallbladder problems, and some who have had their gall bladder removed - sometimes wrongly. Gall bladder problems are widely accepted as a celiac symptom around here.

 

The elevated intraepithelial lymphocytes that you mentioned are indeed an early marker of celiac disease. I believe it is considered Stage 1 on the Marsh scale of celiac disease villi damage. Most doctors won't diagnose you as a celiac until stage 3 though which is a crying shame because it means they don't advise a patient to go off gluten, so the villi damge is continued until the patient eventually reaches stage 3 in damage.    

 

This report might be helpful. On pages 8-10 the endoscopic diagnosic criteria are discussed. Pages 10-12 discusses the blood tests normally used. Open Original Shared Link

 

Low vitamin D and poor fat absorption are classic celiac disease signs...

 

I think you may have celiac disease but your villus atrophy is not advanced enough for a diagnosis, and your blood antibody levels are not high enough to register on blood tests.  You certainly have enough symptoms, as well as some indication that your intestines are being attacked, to warrant going gluten-free.

 

You don't NEED a diagnosis of celiac disease to go gluten-free.  Many around here have gone gluten-free without knowing for sure whether they have celiac disease or non-celiac gluten intolerance (NCGI) and to be honest, the treatment is exactly the same as all all of the symptoms (except the villi damage). You might want to try the gluten-free diet for 3-6 months and take note in a journal how your symptoms change. Just give it a many months as some symptoms are very very slow to change and do so so slowly that it's barely noticeable. Plus some experience a withdrawal in their first few weeks gluten-free and end up feeling worse for a time.

 

As an aside, IgE testing is for allergies. Celiac is autoimmune based and tend to affect the IgA (mucosal linings) and IgG (more pathogenic) parts of the immune system. They are separate things. Food sensitivities are usually tested under IgG as far I understand it.

 

And I believe that a casein intolerance (dairy proteins in milk) can cause similar damage to the gut but I'm not educated in that area. I DO know that many celiacs are lactose intolerant because of the damaged intestines. That often disappears over many months as healing occurs.

 

Good luck. I hope you find some answers... And I hope you give the diet a try.  

[viper]

I feel like I'm in your boat.  Low Vitamin D, recent onset.  I've been through a gambit of testing with no positive from the Drs on anything.  My 24 hour stool was showing some fat malabosorbtion but not all.  My biopsies came back normal.  I have a couple of other symptoms like shaking, flush of the skin, sweating.  I also have trouble focusing and going to work.  The Drs. have me on a myriad of phsych drugs that keep anxiety at bay that I now have from being sick for so long.  They've even started me on acid blockers for dmg to my esophagus that I wasn't aware of.  We should try and stay in touch, it seems like its going to be gluten for me since i did the gluten chanllenge and I'm now suffering for the 3rd day straight after being gluten free for 6 weeks.  But if not I'm still wanting to explore all options, turn every stone.

 

Vip

[cyclinglady]

I was formally diagnosed this year. My husband has been gluten free for 12 years at the advice of his GP and my allergist. He will never get tested formally. Why bother? He feels great. Eats gluten and gets sick.

Give the diet a try for six months. It certainly sounds like you have celiac disease.

Welcome!

[0range]

It's frustrating...Hang in there.

 

Withe the gene tests, I recently read in Dangerous Grains that the DQ2 gene is in only 90% of celiac and that the DQ8 gene is only in  94% of celiacs (I think those were the numbers). That means that it is possible for approximately 5-10% of celiacs to not have the "required" genes; in fact I think there are one or two of our celiac forum members who have had that experience.

 

I'm not sure where I read this statistic (whoops!), but only 8-10% of celiacs have the HLA-DQ8 gene? Compared to 90% of celiacs that have the HLA-DQ2. So HLA-DQ2 is the "riskier" gene, so to speak but it's really hard to say because HLA-DQ8 occurs far less often in the overall population - 10% compared to 30% in healthy individuals for the more common HLA-DQ2. I remember reading about this after I was interested what my "risk" would be due to carrying HLA-DQ8.

 

Ah, here it is!: Open Original Shared Link

as well as: Open Original Shared Link

[nvsmom]

I'm not sure where I read this statistic (whoops!), but only 8-10% of celiacs have the HLA-DQ8 gene? Compared to 90% of celiacs that have the HLA-DQ2. So HLA-DQ2 is the "riskier" gene, so to speak but it's really hard to say because HLA-DQ8 occurs far less often in the overall population - 10% compared to 30% in healthy individuals for the more common HLA-DQ2. I remember reading about this after I was interested what my "risk" would be due to carrying HLA-DQ8.

 

Ah, here it is!: Open Original Shared Link

as well as: Open Original Shared Link

I think, and I could be reading it wrong, that those stats mean different things. The ones I remember from Dangerous Grains (and I may have remembered wrong) refere to the percentage of celiacs who have those genes whereas the sites you provided refer to the percentage of the total population that have those genes.  

 

If we combine our stats it could be interpreted to mean that even though only 10% of people have the DQ8 gene, about 94% of celiacs have it, so if you have the DQ8 gene, it appears you have a higher probablity of developing celiac disease than if you have the more common DQ2 gene... but there will be more celiacs with the DQ2 genes in the world since it's the more common gene.

 

At least that's how I would interpret it... with no stats background.  LOL

[0range]

I think, and I could be reading it wrong, that those stats mean different things. The ones I remember from Dangerous Grains (and I may have remembered wrong) refere to the percentage of celiacs who have those genes whereas the sites you provided refer to the percentage of the total population that have those genes.  

 

If we combine our stats it could be interpreted to mean that even though only 10% of people have the DQ8 gene, about 94% of celiacs have it, so if you have the DQ8 gene, it appears you have a higher probablity of developing celiac disease than if you have the more common DQ2 gene... but there will be more celiacs with the DQ2 genes in the world since it's the more common gene.

 

At least that's how I would interpret it... with no stats background.  LOL

 

hahaha I am taking stats next semester, I should apply the knowledge I have learnt and get back to you! 

[nvsmom]

Excellent!  My babble above was about the extent I could stretch my brain this evening.  LOL  Good luck with the stats!