Cboogy

My understanding of an IEL (intraepithelial lymphocyte) is that it is just a type of white blood cell that indicates inflammation of whatever tissue it is found in. I went from an old diagnosis of Celiac to a new diagnosis of lactose intolerance, carnitine deficiency and likely H. Pylori. I am having my blood celiac panel rechecked now that I've been on a gluten challenge for basically 9 months. It could come back positive for celiac disease, but if it's negative we will all be convinced that I never had celiac in the first place. 

There are many reasons for doubting the original diagnosis. Going gluten free made literally no difference in my symptoms. So eventually I saw a nutritionist and other docs for a 2nd and 3rd opinion and they've informed me that there is literally nothing in my medical record leading to a Celiac diagnosis. They said the original tests I have on record are meaningless and they do not even order those anymore. I never even had an endoscopy with the original diagnosis, and when I finally did have it done there was no villous atrophy. The original doctor ran the wrong blood tests (tests that are not highly specific to celiac disease), and also ran tests that are considered alternative and quacky, which makes us highly suspicious of the accuracy of his diagnosis. My new doctor said it's "embarassing" how little some of my previous doctors understood what they were doing. The doctor that did my upper endoscopy never even took a gastric biopsy, which should be standard procedure! Now I'm having to go through 3 more tests because of that. Smh...

Maybe you can start a topic about diagnosis based on increased IEL's to see if anyone else was diagnosed that way.  Have you gotten a second opinion?

My new doctor says I do NOT have Celiac disease based on my history. According to his research only 12-20% of patients with elevated IELs actually have celiac, so you cannot diagnose Celiac based on this result alone. At least not without ruling out all other possible causes for the IELs (there are several). In fact, he performed some simple tests (breath and blood analysis) that previous doctors neglected or refused to offer me, which revealed lactose intolerance, H. Pylori antibodies and carnitine deficiency. Feeling much better now that I'm being treated for the correct diagnosis! And also less frustrated! 

I had an endoscopy in March which reported "no convincing villous atrophy" but also said that the "intraepithelial lymphocytes are towards the upper normal range and the chronic inflammatory cells are also towards the upper range".

After lots of asking, I've finally got the patholgist to do an IEL count on the sample and have been told that it was 35-40. I think I've seen articles which have said that Coeliac was previously diagnosed if the count was over 40 but that a count of over 25 is now regarded as low grade Coeliac, even without villous atrophy. This would obviously put me into the Coeliac group (my bloods were negative but a gluten-free diet is working wonders).

Does anyone have any experience of IEL counts who could confirm whether or not 35-40 is high enough to be considered early stage Coeliac?

In some respects it doesn't matter as I know that a gluten free diet is helping but I can't get foods on prescription without a formal diagnosis, plus I'd like to understand what's going on.

I will reply even though this is from 2008... I just got diagnosed with Celiac Disease because my IELs were "greater than 30." I do not improve on a gluten free diet. My bloodwork is all negative. All my blood vitamin and mineral levels are normal. I have the DQ2 gene so given that it's possible for me to have Celiac they went ahead with the diagnosis of celiac disease.

So based on my diagnosis, if you have more than 30 IELs/100 AND you feel better on gluten-free diet, you probably have celiac disease.

No need to apologize. For one, I just noticed this was from March and they probably already have their answer.  I just didn't want to give anyone false hope. I really don't think doctors diagnose Celiac based on increased IELs alone, and the OP didn't state just what the findings of the endoscopy was.  I didn't want them confused.  We're all here to help

The reason I'm following this topic is because a few weeks ago I was diagnosed with Celiac based solely on elevated IELs, so I am really scrambling to understand because everything I've been reading does not match my test results or experiences. Talk about frustrating. I had negative blood work and I'm not IgA deficient, so I tried eating a high-gluten diet for two months for a retest and my antibody levels actually went DOWN, and my symptoms seemed to be getting better. I'm waiting for the Dr. to call me back about that one. Before the endoscopy I'm told villous atrophy is what they're looking for. Then they say "Weeeeeeeell, lymphocytes are sort of a positive result too." Then I'm told the bloodwork will "definitely show something" and then when the results come back negative they're like "Weeeeeeeell, that's still possible." I just wish they'd give me some more concrete evidence if I'm required to make a lifelong decision to be strictly 100% gluten free. 

h-pylori might cause increased IELs but it will not cause the atrophy of the villi.

 

The study/research that is posted above is from 2006 and clearly states that only 17 people out of the original 639 were included in the final research. Only 2% of the initial 639 were celiacs, which it doesn't state how many of them actually made it into the final 17.  This study also only deals with the IELs and doesn't state anywhere the correlation of atrophied villi. 17 people doesn't make scientific research in my opinion.

I am not referring to villous atrophy, as that is the Gold standard for Celiac diagnosis.  Maybe all of these sites are out of date, but I thought it could still be a possibility to rule out. My apologies. Open Original Shared Link

I went in to the doctor three weeks ago with severe stomach pains, diarhea, etc. I tested positive for H Pylori but was ordered to have a colonosoy and Upper Gi. I also was told I needed to have my gallbladder removed which I did. I went on Prevpak for two weeks (and had the colonoscopy/upper GI while on prevpac). I just got the biopsy report back which showed that I showed "early" signs of celiac. Would the h pylori make the biopsy look positive for celiac when I really don't have it? Blood work was negative for celiac.

Yes, it can cause increased IELs, which is also a warning sign of Celiac Disease. Here are a few research articles explaining:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I, too, only showed Marsh 1 and negative bloodwork. My dr called it seronegative celiac. I've been gluten-free for about 10 months and saw a huge improvement. Then felt worse than ever. I've found I am lactose intolerant, sensitive to corn and night shades, spicy, oily, or acidic foods wreak havoc for me and am now suspecting another food : / I'm also getting my thyroid and vitamin levels checked because I'm still having many bad days. Do you think you may be reacting to other foods? Try an elimination diet and track your symptoms. You may find a source to your misery.

I also learned I have a 2 day period before I react, so it made it difficult to pinpoint what was making me sick. The elimination diet helped with this issue.

Cross contamination may be an issue, also. I don't react to small amounts, but the build up of small doses may be bothersome. I found many areas to watch for cross contamination. Maybe this can be a source of your pain?

I sure hope you find your answer and feel better!

Thanks for your reply. It's good to know I'm not the only one diagnosed in this way, because I've scoured the internet and barely found any mention of Marsh 1 being diagnostic in and of itself. I'm also just outside of the standard range for hypothyroidism but not quite enough to get taken seriously. I'm in the "sub-clinical" range. 

I recently developed a sensitivity to onion/garlic, which is what led me to find the low FODMAP diet. I bought the IBS book Free at Last and plan on starting an elimination diet this week regardless of whether I have full blown Celiac. The combination of multiple food sensitivities, mild symptoms and probable delayed reactions is making it hard to figure out, indeed! 

Blood test results BEFORE challenge:

TTG IGA <4 U/mL no antibody detected (my value = 1)

IGA standard range 91-463 (my value = 150)

Blood test results AFTER 8-week challenge:

TTG IGA <4  U/mL no antibody detected (my value = 1)

IGA reference range 81-463 mg/dL (my value = 145) 

gliadin deamidated IGA <20 units = none detected (my value = 3)

gliadin deamidated IGG <20 units = none detected (my value = 3

TTG IGG <6 U/mL no antibody detected (my value = 1)

endomysial antibody scr IGA w/ ref to titer (negative)

squamous epithelial cells - none seen

I wanted to do a longer gluten challenge but the doctor looked very disapprovingly, as she said 4 weeks would be 95% accurate and at 8 weeks the bloodwork would "definitely show something." This is where Dr. Fasano used to do his research. Key phrase being "used to."

Hm, but what if all you have is elevated lymphocytes in the colon and small intestine? No anemia, no deficiencies, no villous atrophy, normal architechtural as they say, negative bloodwork on every possible antibody test, and no response after years of being gluten free ... then what? That's where I'm stuck right now. 

I am not convince I have active Celiac Disease. I'll summarize as briefly as possible. Past 5 years I've been gluten-free because I thought I had Celiac (long story). Decided to start over and get thoroughly tested by a new doctor. Here are the deets:

Symptoms: cramping, burning in stomach, gas, distention, random abdominal pains (no diarrhea, no dematitis) 

Never had a nutritional deficiency or anemia, whether eating gluten or not

No improvement of symptoms on gluten-free diet

No relatives diagnosed with Celiac

Celiac bloodwork while Gluten-free: all negative, despite ongoing symptoms  

5-week gluten challenge: biopsies show Marsh 1 elevated epithelial lymphocytes in small intestine and colon

No villous atrophy or structural change.

Repeated celiac bloodwork after 2-month gluten challenge: all very negative again, no change whatsoever

Diagnosis ==> Celiac Disease 

Is there anything else that could have caused the lymphocytes in my colon and small intestines? 

The only things that seem to give me relief are a combination of ginger root, probiotics, vigorous cardio exercise, tons of sleep, and avoiding acidic foods, caffeine and FODMAPs. (That's kind of a lot to keep track of.) Most gluten free baked goods actually make me feel really sick!! I feel much better just eating a regular Dunkin Donut, honestly! Gluten-free is not helping me and it's making my life so complicated.   I'm afraid of developing an eating disorder because I have come to view all food as being poisonous because I don't understand what will or won't me sick. Thanks for any help.