More Results From Enterolab

[coldnight]

Gluten Sensitivity Stool Test

Fecal Anti-gliadin IgA 98 Units

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Quick story, and I'm sorry to keep repeating it, just in case someone hasn't seen a previous post. So, 9 yrs IBS, lots of meds (lomotil, codeine, morphine)... accidentally go gluten free by process of elimination... symptoms 95% resolved in a week. Had a gene test, do not carry DQ2 or 8. DQ2.2 and DQ6.3, i believe.

Still sensitive to a LOT of foods... but not having D daily, C is more of an issue w/o gluten with occasional D, but not daily or all day as before. At the time I sent this to them, I had been gluten-free (as close as I can get) for ~2mos. I notice they just look for anti-gliadin IgA. Can they not find antibodies that cause intestinal damage?

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I know there is some question about the accuracy of these tests, so I'm just wondering what this means in the scheme of things to you folks? Statistically, it seems unlikely I have celiac, given the gene test. The dietary response has been really good... I'd kind of like to know something you can't answer, so maybe I need to do a challenge. But I'm still wondering whether symptoms will resolve, shouldn't they resolve sooner if it's intolerance since no damage would have been done? Why do I still get sick at times, and still sensitive to foods like corn, tomatoes, all dairy, soy... etc.

I still find it hard to believe that I have so many intolerances, but no underlying cause. It's not that I WANT to have celiac disease, I just want some insight as to what I should do next. Obviously keep avoiding gluten, but when should I see further improvement (I still take 0.5 - 0.25 lomotil a day, down from 9 tablets, but none would be preferable)? When I don't eat dairy, I don't get sick, when I eat it, I'll get horrendously sick for maybe a day, but it goes away. It's not the same with gluten. If I eat even a fairly small amount, I will be sick for nearly a week. This disturbs me.

Should I try to find out if I do have celiac disease with a challenge and blood test, even if it's remote?

Still very confused... thanks.

[Mother of Jibril]

Have you ever been checked for other autoimmune disorders that affect the intestines like Chron's or ulcerative colitis?

Clearly you have some kind of problem with gluten...

[coldnight]

Yes, they thought I had crohns at one point, but then ruled it out with biopsy. I've had two colos, one sigmoid, 1 endo, they found nothing on those.

[Mother of Jibril]

I don't know too much about Chron's but is it possible the biopsy was wrong? I know the biopsies for celiac are notoriously unreliable. You have to take enough samples from the right areas (since the damage can be patchy) and have them read by a good pathologist who suspects celiac disease.

[coldnight]

I suppose there's always the possibility, at the time, before the results of the biopsy came back, they gave me AZA? Some crohn's treatment, but it made me even sicker. They've done 3 scopes and took biopsies on all, it would be sad if they missed it that many times, but not impossible. Maybe I should just go see the GI, see what he thinks, I really just want to know if this is it, cutting gluten gets me this far, but not going to improve.. or if it's something else underlying it. If it was celiac disease, at least I could have the hope that cutting gluten for 6 more mos or something would just continue to improve symptoms. Medicine wise, I'm much better, I have to take so little now. I guess 1/20th, and at the beginning I took less and less, I just can't seem to get past having to take 1/2 of a lomotil to not be sick, I'm wondering if I'm just stuck at this spot, or will I continue to improve. Unfortunately was too late for them to re-scope and redo bloodwork to look for celiac disease... a rechallenge for 2 months would be a nightmare. So... I guess I'm just sort of in limbo, maybe I just need to wait and find out, I'm so impatient though. =)

---EDIT---

Urg genes, got them confused, do not have DQ2.2, DQ2.3, the non-celiac gene. So, to clarify, none of the main celiac genes. DQ2 or DQ8. Sorry!

[mftnchn]

It is hard when you don't have a definitive diagnosis. As it seems you know, you still have a chance of being celiac even without the main genes.

Gluten is something that is very hard to digest, and when you get leaky gut syndrome, it leaks out into the system and you can get antibodies to it. It might be possible that something else is causing the leaky gut and you are intolerant to gluten but not celiac.

For me, gluten free was just not enough. Even casein and soy free was not adequate. Finally the answer came when tests of fecal residue showed high levels of sugar. This should not happen, sugars should be absorbed in the small intestine. I haven't been making the carbohydrate digesting enzymes (secondary to villi damage) and can't break down carbs. My doctor put me on the SCD last summer, and I made immediate and dramatic progress. Its a wonderful diet for those who need an extra boost of healing.

At first I was impatient for a more clear diagnosis of celiac; I wasn't able to do the blood test and biopsy because I was overseas for ten months (where nobody had heard of it). I found that over a year's time, when I put all the pieces together, I finally believed my doctor's clinical diagnosis of celiac. I hope you can be patient with yourself, seek the evidence you can, experiment to find your own proof, and in the end be satisfied with what works for you.

[ravenwoodglass]

Just because you don't have the celiac genes that are currently considered the only celiac genes in the US does not mean you can't have celiac. There have recently been 7 more genes associated with celiac that are recognized, at least in other countries. I was thankful I was diagnosed firmily before I did any gene tests. The doctors here would have just said I had rheumantiod arthritis and stopped there and I would most likely be dead by now.

You say you had 95% improvement on the diet. I would continue with the diet, your body has told you clearly that it wants you to be gluten free. That does not mean that there may not be other things that you are intolerant to or that you couldn't have another condition but it seems pretty conclusive that gluten is an issue.

[nora-n]

If you check wikipedia on HLA DQ and DQ2, it says that there are celiacs with DQ2,2, just not so many as with 2,5. It also says so in medical literature.

In the study of 1008 european celiacs, 6% did not have the usual DQ2 or DQ8, and most of those had half a gene, and 0,4% had other genes. There was a thread about that here not so long ago, started by "half full" and she had access of the whole article and posted which genes they had.

[coldnight]

If you check wikipedia on HLA DQ and DQ2, it says that there are celiacs with DQ2,2, just not so many as with 2,5. It also says so in medical literature.

In the study of 1008 european celiacs, 6% did not have the usual DQ2 or DQ8, and most of those had half a gene, and 0,4% had other genes. There was a thread about that here not so long ago, started by "half full" and she had access of the whole article and posted which genes they had.

I should clarify, because the genes are still confusing to me, and I stated it wrong in the first post :

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

From what I understand, not much, but that makes the chance of celiac very low. I'd like to know if I have it though, I guess I will just stick to the diet for several more months and see if improvement continues. It would just be nice to know whether it's intolerance or celiac disease. I mean, what I don't get, is eating something I can't handle, like dairy, will make me sick for a day, but flour or pretzels or something, will make me sick for nearly a week. Maybe that's just how it works for me.

[holiday16]

I should clarify, because the genes are still confusing to me, and I stated it wrong in the first post :

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0603

From what I understand, not much, but that makes the chance of celiac very low. I'd like to know if I have it though, I guess I will just stick to the diet for several more months and see if improvement continues. It would just be nice to know whether it's intolerance or celiac disease. I mean, what I don't get, is eating something I can't handle, like dairy, will make me sick for a day, but flour or pretzels or something, will make me sick for nearly a week. Maybe that's just how it works for me.

Just wanted to pass on my youngest daughter has the same DQ 2.2 gene you have along w/ a non-celiac gene. She is considered low risk for celiac as far as genetic testing goes, however she reacts more than my son who has the same half gene, but is combined with another that essentially turns it into a full celiac gene. Confusing, but genetic testing shows him to be very high risk for celiac as is my dh (who he received the half gene from). Yet she reacts more than they do and was the one that presented w/ the most intestinal problems etc. My dd's reactions also last about a week. The diagnosis of celiac can be very frustrating. My son had neg. bloodwork, neg. biopsy, but because of his high genetic risk the GI Dr. wanted him to try a gluten-free diet and he had drastic improvements. He can't be termed celiac technically because of the neg. biopsy, but they know he is.

I agree that it would be nice to know whether it's celiac or intolerance, but sometimes you have to accept you may never have a def. answer as far as that goes. Despite what some people may say being diagnosed w/ an intolerance does not make it any less significant than having celiac. Personally, I believe there just is not enough known in the medical community about all the effects/damage gluten can cause.

Paulette

[coldnight]

Just wanted to pass on my youngest daughter has the same DQ 2.2 gene you have along w/ a non-celiac gene. She is considered low risk for celiac as far as genetic testing goes, however she reacts more than my son who has the same half gene, but is combined with another that essentially turns it into a full celiac gene. Confusing, but genetic testing shows him to be very high risk for celiac as is my dh (who he received the half gene from). Yet she reacts more than they do and was the one that presented w/ the most intestinal problems etc. My dd's reactions also last about a week. The diagnosis of celiac can be very frustrating. My son had neg. bloodwork, neg. biopsy, but because of his high genetic risk the GI Dr. wanted him to try a gluten-free diet and he had drastic improvements. He can't be termed celiac technically because of the neg. biopsy, but they know he is.

I agree that it would be nice to know whether it's celiac or intolerance, but sometimes you have to accept you may never have a def. answer as far as that goes. Despite what some people may say being diagnosed w/ an intolerance does not make it any less significant than having celiac. Personally, I believe there just is not enough known in the medical community about all the effects/damage gluten can cause.

Paulette

Yea, I can accept that. I don't mind not eating gluten, I need to eat better anyway. I guess it'll just take time to find out if I can get well enough to get completely off the medicine. For like 9 years I've just been surpressing symptoms with massive amounts of medicine. So, I guess it might take many months... I guess that's what bugs me, if it was an intolerance, I should probably feel better by now. Of course it could be other things as well, probably coke/caffeine, would be the top of my list. I guess I just need to remember that I am functional on less than 1/20th, maybe 1/30th of the medicine I was taking. I just still get sick from time to time, if this was due to some reversible damage it would be comforting to know. If it's just how I will always feel, it sucks just as much as 9 years of IBS did. =)

But I understand, either way... I think it will just take time. Now off to face several meetings feeling crappy. Ugh. =)