Test Results Not Making Sense

[designgirl]

To make this an extremely short story for now - in August 2008 I went in the hospital for several days. Initially they thought I had appendicitis then they told me I had terminal ileitis (after colonoscopy and CT scan) next I was diagnosed with Crohn's disease.. after yet another colonoscopy, pill cam, and another CT scan they ruled out Crohn's disease. Then I got tested for Celiac Disease. My doctor suggested I go gluten-free for 2 months and see what happens. I got a skin allergy test and the only food I'm allergic to is oysters. I've been gluten-free for over a month and then I got retested because I don't feel significantly better. My test results went UP from the first time.

August, September, and half of October I was going to the bathroom usually 4x a day. My symptoms now: constipation (taking Milk of Magnesia, using enemas, and glycerin suppositories - was on Miralax). I always feel like I'm constipated and every time I have a BM it is strained regardless if the laxative I'm using is soft. It feels like there is still stool inside of me and often there is (I find out through the enema almost 90% of the time) I am also nauseous often.

October test:

RETICULIN IGA, TITER, SER, QN, IF <1:10 <1:10-

RETICULIN IGG, TITER, SER, QN, IF <1:10 <1:10-

TISSUE TRANSGLUTAMINASE IGA, TITER <3 <5- u/ml

Reference range:

<5 U/mL Negative

5-8 U/mL Equivocal

>8 U/mL Positive

IGA 232 81-463 mg/dL

GLIADIN IGA, EIA 14 <11- u/ml H

Reference Range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

GLIADIN IGG, EIA 12 <11- u/ml H

Reference Range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

November test:

RETICULIN IGA, TITER, SER, QN, IF <1:10 <1:10-

RETICULIN IGG, TITER, SER, QN, IF <1:10 <1:10-

TISSUE TRANSGLUTAMINASE IGA, TITER <3 <5- u/ml

Reference range:

<5 U/mL Negative

5-8 U/mL Equivocal

>8 U/mL Positive

IGA 226 81-463 mg/dL

GLIADIN IGA, EIA 15 <11- u/ml H

Reference Range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

GLIADIN IGG, EIA 14 <11- u/ml H

Reference Range:

<11 U/mL Negative

11-17 U/mL Equivocal

>17 U/mL Positive

I don't understand how my gliadin IGA and IGG have gone up. I have not spoken to my doctor about my last test results because of the holiday. She has not diagnosed me with celiac disease.

It seems like there are very many knowledgeable people here. Any help would be greatly appreciated! Happy Thanksgiving!

[Fiddle-Faddle]

The only way I can think to be helpful is to ask exactly what you are eating.

Many of us, perhaps most of us, THOUGHT we were gluten-free in the beginning, but weren't.

Things that have gluten, but you wouldn't think they did include:

soy sauce (most brands contain wheat)

corn flakes (contains barley malt)

rice krispies (contiains barley malt)

deli tuna salad (contains bread crumbs)

rotisserie chicken (most brands marinated in wheat-containing soy sauce)

"lite" ice cream (contains wheat as thickener instead of cream)

most restaurant sauces (contain flour)

Rice Dream brand Rice Milk (processed with barley enzymes, contains measurable amounts of gluten that fall just under the limit, so they are legally allowed to call it gluten-free)

ANYTHING WITH SPELT or KAMUT is WHEAT AND DOES HAVE GLUTEN.

I would wonder 2 things:

Do you have an underlying issue such as Lyme Disease (undiagnosed as yet)?

Are you currently eating a significant amount of dairy, plus a lot of gluten-free bread-type items, plus perhaps a small amount of gluten that you're not aware of? That would account for your gut not healing, your symptoms not resolving, and possibly for the numbers not going down, especially if you were already gluten-lite at the October test.

[designgirl]

The only way I can think to be helpful is to ask exactly what you are eating.

Many of us, perhaps most of us, THOUGHT we were gluten-free in the beginning, but weren't.

Things that have gluten, but you wouldn't think they did include:

soy sauce (most brands contain wheat)

corn flakes (contains barley malt)

rice krispies (contiains barley malt)

deli tuna salad (contains bread crumbs)

rotisserie chicken (most brands marinated in wheat-containing soy sauce)

"lite" ice cream (contains wheat as thickener instead of cream)

most restaurant sauces (contain flour)

Rice Dream brand Rice Milk (processed with barley enzymes, contains measurable amounts of gluten that fall just under the limit, so they are legally allowed to call it gluten-free)

ANYTHING WITH SPELT or KAMUT is WHEAT AND DOES HAVE GLUTEN.

I would wonder 2 things:

Do you have an underlying issue such as Lyme Disease (undiagnosed as yet)?

Are you currently eating a significant amount of dairy, plus a lot of gluten-free bread-type items, plus perhaps a small amount of gluten that you're not aware of? That would account for your gut not healing, your symptoms not resolving, and possibly for the numbers not going down, especially if you were already gluten-lite at the October test.

I think I'm doing a great of watching what I'm eating. I bought wheat free soy sauce, gluten free breads (rarely even bother eating them), and I've barely gone out to eat to minimize any screw ups out of my control.

I believe that I'm educating myself very well with everything that is wheat. There was only one time several weeks ago that I knew I ate something after I ate it that had wheat in it (a single bite).

I just don't get it.

[Fiddle-Faddle]

Did you check out the Lyme Disease thread on this board? There are quite a few people here with either celiac or gluten intolerance who ALSO had Lyme Disease. A fair number also have candida issues.

And what about dairy--could that possibly be an issue for you? Or soy? Many people on this board have multiple food intolerances. Some can't tolerate ANY grains--including rice.

[nora-n]

Your antigliadin tests were the only ones with any response, and they were in the grey zone, and just barely. If they went up one point it might only be a normal lab variation within the normal variation. Antigliadin antibodies can hang around a while, especially the IgG version which can hang around for a year after going gluten-free. They can also be slightly positive with diabetes type 1 and giardiasis and maybe another thing or two.

I was glutenfree for seven months when I woke up one morning and no longer had this awful fatigue. Not everyone has fantastic immediate response the first days.....mine was gradual and the fatigue lifted almost last.

Did you mean the test called IgA? that is for total IgA and is just for checking if the IgA antibody testsre valid, because if the total IgA is low then they have to run the IgG versions of the tests. The total IgA does not say anything about celiac (but actually, those with IgA deficiency have a greater risk of being celiac)

If you are gluten intolerant from lyme, or anything else, or just gluten intolerant, there may be negative celiac tests but the numbers may be not zero.

nora

[designgirl]

Did you check out the Lyme Disease thread on this board? There are quite a few people here with either celiac or gluten intolerance who ALSO had Lyme Disease. A fair number also have candida issues.

And what about dairy--could that possibly be an issue for you? Or soy? Many people on this board have multiple food intolerances. Some can't tolerate ANY grains--including rice.

I checked out the Lyme Disease thread on the board and I seem to have quite a few of the symptoms, but none other than the GI are very major. I've always had a lot of the problems - like allergies, sinus problems, headaches, etc. I'll talk to my doctor about it though as well as the candida.

I tried the skin allergy testing, but didn't do the blood work for the 99 food items (the allergist suggested that, but he blamed my body fat being too high for my GI problems! I'm overweight, but not obese). The only thing that came back was oysters for the skin test.

My doctor isn't in the office for a week... but after 4 months what's another week to her? Ha. Maybe I'm not voicing myself enough. I hate to keep acting like "I'm the expert" and googling around for a diagnosis and asking for tests, but I can't keep feeling so rotten. I'm functional enough that I go to work and sit behind my desk (occasionally leaving early), but not enough that I really feel like socializing more than once a week.

Thanks for all the thoughts so far!

[designgirl]

Your antigliadin tests were the only ones with any response, and they were in the grey zone, and just barely. If they went up one point it might only be a normal lab variation within the normal variation. Antigliadin antibodies can hang around a while, especially the IgG version which can hang around for a year after going gluten-free. They can also be slightly positive with diabetes type 1 and giardiasis and maybe another thing or two.

I was glutenfree for seven months when I woke up one morning and no longer had this awful fatigue. Not everyone has fantastic immediate response the first days.....mine was gradual and the fatigue lifted almost last.

Did you mean the test called IgA? that is for total IgA and is just for checking if the IgA antibody testsre valid, because if the total IgA is low then they have to run the IgG versions of the tests. The total IgA does not say anything about celiac (but actually, those with IgA deficiency have a greater risk of being celiac)

If you are gluten intolerant from lyme, or anything else, or just gluten intolerant, there may be negative celiac tests but the numbers may be not zero.

nora

I asked for my blood work to be done to make sure I wasn't losing any electrolytes from all my enema's. My random blood glucose came back at about 125. I've been tested for diabetes several years ago and everything was OK. I still haven't talked to my doctor about the latest results because of the holiday.

I know she's talked about doing an upper endoscope.

In the system it has me listed for irritable bowel syndrome and constipation. SOMETHING has to be causing it.

Also, a side note: I went to China for a few weeks back in February. My doctor kind of brushed it off like it wasn't a third world country. I don't know it that'll help.

Thanks for the thoughts.

[nora-n]

Have you checked out Dr. Levey's web pages? there can be other gluten sensitive illnesses in the gut which they do not routinely test for. He describes some on his web pages, you might have to browse back some time in his blog too. Thefooddoc.com or something like that.

Only about 5% of celiacs are under-weight, and a lot are obese.....many doctors refuse to believe that. Mine refuses.

constipation is also a common celiac symptom. I thouhgt they did an upper endoscopy on you but it sounds like they did not. Celiac is supposed to show in video capsule endoscopy but maybe they did not look for it at all, maybe someone shoud look at it again and this time loo for celiac. It is much better than uppper endoscopy some say. But if they are not looking for celiac they might miss it.

Also, with upper endoscopy they can test the biopsy specimens with gliadin to see if an immune reaction occurs. I read a posting on a forum (delphi celiac forum) that Dr. Greene did that to someone recently who was not getting better on gluten-free diet and it showed that the celiac diagnosis was right since the specimen reacted to gliadin.

I have not herar of anyone else who had this done. I wish they had done that on my biopsy specimens. I was scoped after too short time back on gluten.

nora

[Fiddle-Faddle]

You may have a bacterial infection of the gut that has nothing to do with gluten. This doesn't mean that you don't have a problem with gluten, only that the 2 need to be assessed and treated (if necessary) separately.

[gfpaperdoll]

Really at first you should cut out all dairy & all soy. So no wheat free soy (soy) sauce!

Also, do you live alone? Are there people there cooking with flour or cake mixes? Are you cooking with wheat products? Do you work in an environment that has food preparation?

Do you have pets? Did you change your shampoo & lipstick to gluten-free?

Did you go to all whole foods & not eat the gluten-free grain processed foods?

IMO, if you eat those grains I think that they are somewhat cross contaminated & you could be getting enough gluten to prevent healing. I cannot eat most of them...

Are you taking B12 & D? Did you get your vitamin & mineral levels checked?

The diet is very hard, we know that you were very diligent, but I tell all my friends that it takes about 3 months to get it mostly right & then the rest of that year to make mistakes. I think that major healing really begins in the second year... I could not believe it but I even saw improvement at 3 years. I swear I just keep feeling better & better every year. I am gluten-free 4 1/2 years now.

[designgirl]

Really at first you should cut out all dairy & all soy. So no wheat free soy (soy) sauce!

Also, do you live alone? Are there people there cooking with flour or cake mixes? Are you cooking with wheat products? Do you work in an environment that has food preparation?

Do you have pets? Did you change your shampoo & lipstick to gluten-free?

Did you go to all whole foods & not eat the gluten-free grain processed foods?

IMO, if you eat those grains I think that they are somewhat cross contaminated & you could be getting enough gluten to prevent healing. I cannot eat most of them...

Are you taking B12 & D? Did you get your vitamin & mineral levels checked?

The diet is very hard, we know that you were very diligent, but I tell all my friends that it takes about 3 months to get it mostly right & then the rest of that year to make mistakes. I think that major healing really begins in the second year... I could not believe it but I even saw improvement at 3 years. I swear I just keep feeling better & better every year. I am gluten-free 4 1/2 years now.

I live alone so there's no gluten products in my house except for my dog's dog food.. He eats in his own bowls I try to purchase items that aren't even in boxes. I've even tried to stop eating anything with MSG in it. We'll see what the doctor says.. if she ever gets back from vacation.

I have several side illnesses going on right now - middle ear infection and pharyngitis. I'm on cipro and prednisone. I just started taking them so we'll see how I feel.

[sbj]

Only being gluten free for one month is too soon for retesting to see any improvement. Someone else mentioned normal testing variation and they could be correct. Keep doing what your doctor is telling you to do and keep an accurate list of symptoms for him/her to review. You should wait at least 6 months for celiac blood retesting. Hopefully you had an endocscopy while you were still ingesting gluten so that in 6 months or a year you can have another to see if there has been improvement. Best of luck.

[ravenwoodglass]

I live alone so there's no gluten products in my house except for my dog's dog food.. He eats in his own bowls

You may want to see if you can change the dog to a nongluten food. Even though you are not sharing a table the dog will lick himself and spread any glutonly reside all over his fur. When you pet him that can be a CC source as can the act of feeding itself. If you use canned dog foods make sure that you are not sharing a can opener. I thought for a long time I couldn't handle tomato in foods. Every time I would make chili or pasta sauce I would feel glutened. It took me about a year to make the connection to the can opener. I do of course wash it but apparently not well enough.

Be sure to check those scripts you got also. The pharmacist can give you the paper that came with the drugs and that will have the number for the company that makes the drug. Some pharms will call and check for you and if an item isn't safe they can contact the doctor for a suitable substatute.