ginnym

You can also be gluten intolerant without it being coeliac (although some people think it's the early signs of coeliac). My tests are negative for coeliac but the transformation on a gluten-free diet has been amazing. I got "glutened" at the weekend which brought on 3 days of nausea and and 36 hours of abdominal pain. That's all the proof I need that a gluten-free diet is how I must live my life.

Like you, I'm frustrated at not having a name to put to my problem but don't let the docs say (as they did to me) that if it's not coeliac, it can't be gluten. I'm seeing a new consultant on Thursday so I hope for some good advice this time.

Ginny,

Reading through the post it seems your question did not get answered. The only thing I see missing is a Total IgA. This is also called a quantitative IgA. If you are IgA deficient then the other IgA dependent tests such as ttG and EMA would not be accurate.

Salomeh

Thanks for your response Salomeh. I'll ask the docs about it next time I see them.

I used to believe there was a difference but now I think gluten intolerance is just early detection and a name for inconclusive tests that have proven to be unreliable. There are many instances of negative blood work but positive biopsies and vice versa with the biospsy or blood work becoming positive in a year or two. If you feel bad when you eat gluten then your body is reacting to it. Why is it that doctors want you to wait until your body has permanent damage to make a diagnosis. The key is prevention. I wish the medical community could wake up and think outside the box!

As far as testing goes, the endomysial antibody test is supposed to be the most "specific." That's the test the pediatric GI left out of my children's panel and now I'm not reassured by their results. Do you have celiac in your family?

I don't know of anyone with a diagnosis of coeliac in the family but my late mother always had gastric "issues" and one of my nieces also has lots of problems. I know that gluten free works for me but one of the reasons for wanting a definite diagnosis is so that I can advise the rest of family about testing for coeliac. I know I can always do that anyway and my niece may well have a GP who will test if my brother asks but it would carry more weight if he could say with certainty that there was a family member with coeliac.

My previous biopsy states, "Due to the slight increase in intraepithelial lymphocyte minimal change or early phase of celiac sprue cannot be ruled out."

ANy opinions on this??

I also had a raised lymphocyte count on biopsy (count was 40) but it also said there was "no convincing villous atrophy" and my blood tests were negative so my docs have said I don't have coeliac. Gluten free diet has relieved my abdo pain so I'm assuming I have a gluten intolerance, even if it's not coeliac. I haven't found anyone who can explain whether the raised IEL count is due to the intolerance or whether it's caused by something else (or if it means I actually do have early coeliac).

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 hadn't started a gluten-free diet, I was just eating practically nothing because I was so unwell. The docs keep telling me there's no such thing as a false negative which I know isn't true, but I wasn't even sure if they'd done all the right tests anyway. My biopsy was inconclusive too so I guess I must be one of those with a non-coeliac gluten intolerance.

I've been told my tests for coeliac are negative even though a gluten free diet has totally eradicated my symptoms. To be honest, that's enough for me and I'll carry on with the diet but I'm still curious about the tests. When I had the blood taken, I'd eated almost nothing for 3 weeks which may have affected the results. This is what they say:

Endomysial IgA - negative

IgA 1.51 (NR 0.64-2.97)

IgG 10.80 (NR 5.80-15.40)

IgM 1.80 (NR 0.71-2.30)

Anti IgA transglutaminase - negative <10 U/ml

I seem to be right in the middle of most of the normal ranges which seems to confirm the doc's view that I'm negative for coeliac. Can anyone tell me if those are all the tests I should have had done or are there any others (I'm UK based)?

Thanks

Ginny

I've also had negative tests but have responded superbly well to a gluten free diet so my doctors are suggesting it might be a gluten intolerance but not coeliac.

Does anyone know if a non-coeliac gluten intolerance is permanent like coeliac or is it something you can recover from over time and then re-introduce gluten into the diet?

That's why I want to know too. I guess I'm afraid of having the beginning stages of celiac and if I reintroduce gluten thinking that I can because I think it's just an intolerance. I may be asymptomatic at that time, but really doing dmg inside.

Also before my blood test I was barely eating too. I was pretty much scraping by on crackers and a few other things because I could barely keep it in my stomach, but I thought this was enough gluten to show anything. I have to reveal that the neg biopsy could be my fault because I went gluten free about a week and a half before it. I didn't realize it could really affect things because I figured if there's damage, then wow it must be pretty bad and doubted it could heal that fast. Plus I was so sick I could barely get out of bed and my hair was starting to come out and I was pretty desperate to feel better. I think I should have toughed it out, but it's hard sometimes because from the point of being referred to a GI Dr. to the actual endoscopy took 6 months here in the US. That's a long time and I had already lost 25 lbs. I thought at the time I made the right decision to go off gluten, but I guess it was the wrong one. I'm glad I did go off gluten though. I feel like a new person.

I guess I am just worried about his suggestion to reintroduce things later down the line.

The advice from Coeliac UK is that you need to be eating the equivalent of 4 slices of bread a day for 6 weeks before the tests - I probably hadn't eaten that in the previous 3 weeks before mine!!

I suppose if you're feeling well on the gluten free then there's no reason to reintroduce gluten later on. I've been gluten free for about 6 weeks and was feeling much better but after the hospital made me doubt things, I experimented this week by eating 2 plain biscuits (Rich Tea, don't know if you have them in the US). It took 36 hours but I then had 3 days of severe abdominal pain which was enough for me to go back gluten free. It also makes me very, very reluctant to re-introduce gluten for the length of time they say is necessary before testing. For the time being, I'll stay gluten free and if the docs still insist it's a gluten intolerance rather than Coeliac, then I might just do a similar experiment every few months.

I'm in exactly the same situation (I posted a little while ago on this forum). I know from having experiemented with the diet and reintroducing gluten that I've got a gluten related intolerance but my doctors won't say it's coeliac. First thing to say is that, from what I've read, it's possible to have a gluten intolerance without it being Coeliac Disease. Some people feel the first is just an early sign of coeliac but others think they're different. Second thing is that it's possible to have false negatives. I had my biopsy first and it showed mild signs which the pathologist said could be coeliac. I then had a negative blood test but was so unwell by the time I had it that I'd eaten practically nothing for the previous 4 weeks which means I may not have had enough gluten in my system for the antibodies to show up. The hospital are unwilling to diagnose off a mildly suggestive biopsy and negative bloods but I'm pursuing it with them.

I've also had people wonder why I'm so anxious to get a definite diagnosis if I know that the diet helps. There are two reasons why I want to be sure whether it's Coeliac Disease or "just" gluten intolerance.

Firstly, here in the UK you don't automatically qualify for food on prescription unless your doctor says it's coeliac, nor do you get the same level of membership of Coeliac UK.

Secondly, it it's Coeliac then I know I have to stay gluten free for the rest of my life. If it's "just" an intolerance then it's something which may resolve in time, in which case I could safely reintroduce gluten.

Just remember, the doctors work for YOU. If you dont like the doctors, fire them and get new ones. They cant tell you what to eat . . they can tell you what they think they see. They dont know everything. If you want more diet proof, eat a full meal w gluten in it, three times a day for a day or two, and see if you believe it now. Then stay off the gluten and dont go back to the doctors until you feel sick.

Just my personal opinion

I'm in the UK so it's not that easy to fire the doctors! Even though we supposedly have the right to choose, I live in a rural area (the Lake District if anyone's been here) and we only have one hospital which limits my options. However, I'm currently under the surgical gastro team so I'm going to ask to be transferred to the medical ones who should know more about things like Coeliac. Luckily my GP is very good and I'm sure he'll be happy to look through some of the stuff I've researched about Coeliac - he's not frightened to admit he doesn't know everything and he treats me like an intelligent adult. However, in order to get the right tests etc, I need the hospital to accept that gluten is the cause of my symptoms.

Since I posted earlier on today I have had more reaction to the trial of two "ordinary" biscuits so I'm now pretty sure in my own mind that it is gluten even if the tests aren't conclusive (maybe I was just in denial before). It's given me the impetus to challenge the hospital so it was worth doing, even though it's painful.

Dr. Lewey did comment about the significance of increased intraepitelial lymphocytes and celiac in several postings on his blog.

Do you have a link to the blog?

Ignore that - I've found it via Google.

Thanks for all your replies folks. I think I've now got enough info to challenge the hospital on their stance that gluten can't be the culprit just because the blood test was negative. I'm quite happy for them to explore all possibilities but I'm concerned that they've dismissed gluten out of hand in spite of the clinical signs.

I suppose I want to be absolutely sure before I embark on a lifetime diet and there's still a nagging doubt in my mind because my symptoms aren't entirely typical of Coeliac. I don't have any bowel disturbance - my "only" symptom is severe upper abdominal pain and some nausea. I've just done a trial and eaten a couple of biscuits which produced some nausea and discomfort within an hour or so but not the severe pain I had before I went gluten free. I'd really hoped it would be more dramatic so that I'd be absolutely certain in my own mind but maybe I need to try it with more than a couple of biscuits.

I'm hoping someone on here can help me work my way through the contradiction of my symptoms and the coeliac tests that I've had. Apologies in advance for the long post

In January this year I started with severe, inflammatory-type pain in my upper abdomen, with some nausea. It seemed to be worse after eating and consequently my food intake dropped significantly. Initially ulcers etc were suspected and I was referred to a general surgeon. I had an endoscopy within a month of symptoms starting. This showed "subtle signs which may be consistent with coeliac" and a blood test was recommended. By the time I had the blood test I was eating practically nothing (I've now lost a fifth of my body weight). The blood tests came back negative for coeliac. Because everything was taking so long and I was in so much pain, my GP suggested a trial gluten-free diet. This brought about a spectacular improvement. A recent test consumption of HP sauce, produced a new bout of pain within hours which lasted for a couple of days so I'm back gluten-free and almost without pain.

I saw the hospital last week and updated them on my diet trials. They were totally uninterested and told me categorically that it was impossible to get a false negative result on the blood test, even though I'd eaten very little food in the preceding month. They also said that if the blood test was negative for coeliac and there was no villous atrophy on the biopsy, then gluten couldn't be the culprit. They're now pursuing some wacky idea about blood supply to my abdomen. I'm confused because I've read a lot of information that says you can have false negatives on blood test, and also that it is possible to be gluten intolerant without it necessarily being coeliac. My experience on the gluten-free diet would seem to support my feeling that gluten is responsible. I subsequently asked for a copy of my biopsy which says that my lymphocyte levels were at the "upper range of normal", although the actual count isn't on the report. It also says that chronic inflammatory cells are towards the upper range but that there was "no convincing villous atrophy". My research suggests that raised lymphocytes are now considered one of the lower grades of coeliac, even without villous atrophy.

I'd be really grateful if anyone could answer a few questions:

Is it possible that I do have coeliac even with the supposedly negative tests?

Is it possible to have false negatives on the blood tests?

Is it possible to have a gluten intolerance without coeliac damage?

Are raised lymphocytes an accepted grade of coeliac and if so, what is the count threshold?

I'm debating asking to be referred away from the surgical team to a medical team who may know more about coeliac and I'm also considering complaining about the information I was given last week but I need to be confident that I'm on the right lines before I go making waves.

Sorry for the long story - I'm desperate for anwers!

Many thanks

Ginny