So Upset. Is This Celiac?

[leethinker]

Hi everyone,

I've posted before. It's been a while. I have had a few tests done and after no diagnosis of anything except for various doctors saying "you definitely have some kind of allergy or intolerance...", nothing has come of them. Then I stopped going to doctors. But now, I have to start again because I just cannot stand to live like this anymore.

Let me give you a quick summary of my symptoms and what has been tested so far:

SYMPTOMS:

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Abdominal pain and discomfort (pain under rib on left side, general crampy feeling all over abdomen, general discomfort)

Go between constipation and diarrhea

EXTREMELY dry skin. It is so dry that it cracks and bleeds.

Occassional sores in mouth.

Elevated (slightly) bilirubin levels.

Fatigue

Whenever I eat noodles/pasta (regardless of what kind), I feel horrible: I feel like i'm drunk and extremely tired. I also get heartburn from it.

Stool looks wierd: undigested food in it all the time. Smells very offensive.

Flatulence and belching

Knots that pop up in my stomach area, which you can actually feel. They go away though. They are like little spasms in the intestines.

TESTING:

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Elevated bilirubin levels

Endoscopy done (where they put a tube down your throat): Gastritis (Type C) was diagnosed, and they said it was likely caused by some sort of allergic reaction. (helipactor bacteria was negative)

Lactose intolerance: negative

Fructose intolerance: negative

Various bacteria found in Stool test (I can't remember right now what...)

RAST test done: they said I'm allergic to bell pepper, mango, cornmeal. But when I eat those things I feel nothing!

IgG (gliadin) was supposedly negative. However, I did go on a gluten-free diet for a while before that, and had only been back on gluten for say 4 weeks.

When they did the endoscopy they also noted that the duodendum was also inlamed.

I think that's all so far. I am going to get a colonoscopy done to rule out anything there. Since I feel pressure *down there* probably due to constipation, I want to get that checked out.

So what do you think?? Could I still have Celiac?? I just don't know what else it could be. My doc has also mentioned IBS.

PLEASE help me out. I just want opinions even if you are not doctors. I'm so desperate!!!

Thank you so much.

Kerri

[RiceGuy]

Well, it sure sounds like Celiac to me.

If you really want to find out if it's gluten intolerance or Celiac, simply try the gluten-free diet for a while, and see how it goes. One quick test you could easily try, is to get a package of Tinkyada rice pasta. This is truly great pasta, and many on this board have served it to gluten-eaters, and they never knew it wasn't made of wheat. If you don't have the symptoms you usually experience from pasta, that'd be a major clue.

Since the antibodies will remain in the bloodstream for a few days at least (I think I read up to two weeks), it shouldn't mess up the tests. However, once you begin to feel better, you won't want to go back. So if you really want a doctor to tell you it's Celiac or gluten intolerance, it is advisable to complete all the tests you really want before going gluten-free. Just keep in mind the high rate of false negatives, and try the diet regardless of the results.

[ravenwoodglass]

Yes it could still be celiac. When they did the endo did they take any biopsies to evaluate for celiac?

When you are done with all the testing you want to have done for celiac you should do a good strict trial of the diet. You don't have to be eating gluten for the colonoscopy as that will not show celiac anyway. I don't know when that colonoscopy is scheduled for but if it is a bit away you might have already found the answer on the diet itself. I hope you feel better soon.

[rinne]

Sorry you are feeling so badly.

It is interesting to me that while they tested you to see what is wrong they never tested you to see if you are deficient in any vitamins and minerals. Low B12 and D is a strong indicator for Celiac although it also indicative of other problems with digestion.

My own theory is that long before damage shows up we are sick but because the tests rely on doctors seeing damage they are not useful until you are damaged, I also think that some of the tests may actually do damage.

I came across an article the other day talking about "prodrone", I think what they were referring to is a seven year period before Crohns becomes possible to diagnose.

A gluten free diet can be a diagnostic tool and if gluten is a problem then dairy may also be a problem. It is worth trying.

[leethinker]

HI everyone,

Thank you so much for your replies!! I actually had tried the gluten-free diet a while ago and it really really helped. Most of my symptoms disappeared. I was diagnosed as being zinc deficient, but I'm not sure about anything else...

I don't have a colonoscopy scheduled yet but I plan to call this week...

Right now I am sitting here feeling like I swallowed a big balloon, probably because I ate a white bread roll an hour ago...

I really wonder though, how can my IgG (gliadin) come up negative and I still possibly have celiac disease?

Is that possible at all??

Thanks again for all your help.

Kerri

[ravenwoodglass]

I really wonder though, how can my IgG (gliadin) come up negative and I still possibly have celiac disease?

Is that possible at all??

Yes that is possible especially since you had been gluten free for a while and it takes a while for the antibodies to build back up in the blood.

You say you had a good response to the diet. IMHO that should be a good reason to do it. You don't need a doctors permission.

[rinne]

I tested negative but I have a sister and brother both diagnosed by endoscopy, I had also been gluten free when they did that test, that combined with my symptoms was enough to convince me to go gluten free regardless of a diagnosis.

[psawyer]

Another possible cause of a false negative is that the immune system overall is impaired. Was a Total Serum IgA test done? This test must be in the normal range for the other test(s) to be accurate.

[leethinker]

An IgA was NOT done. I don't think there are many doctors out there who take this celiac disease seriously, could I be right?? With my endoscopy they wrote on my results that it was unlikely my inflammation was due to an intolerance, yet they did not do a biopsy. Even if they did do one, however, wouldn't it be possible that my intestines have not yet been damaged? After all I have only been having these symptoms for about 2 years now. They started around the time I had my second child. So it hasn't been very long, perhaps not long enough to actually have damage.

I will talk to my gastroenterologist about it again, but I can imagine she will not take me seriously....

So far I have decided to make sure I don't have cancer (get a colonoscopy done), and if they don't diagnose me with anything by then, I will just do the gluten-free diet and see how it goes. I just feel like it's so hard to follow the diet, especially with friends and family and at restaurants, that I would rather have a diagnosis so I can at least have it as *proof* for everyone who will surely think I'm making it up or being overly health-conscious or something... Does that make sense??

But it a diagnosis is not possible then I guess I will just do the diet.

Maybe I can get the doc to test for IgA and IgG (again).

Thanks so much for your help!!

[ravenwoodglass]

An IgA was NOT done. I don't think there are many doctors out there who take this celiac disease seriously, could I be right?? With my endoscopy they wrote on my results that it was unlikely my inflammation was due to an intolerance, yet they did not do a biopsy. Even if they did do one, however, wouldn't it be possible that my intestines have not yet been damaged? After all I have only been having these symptoms for about 2 years now. They started around the time I had my second child. So it hasn't been very long, perhaps not long enough to actually have damage.

I will talk to my gastroenterologist about it again, but I can imagine she will not take me seriously....

So far I have decided to make sure I don't have cancer (get a colonoscopy done), and if they don't diagnose me with anything by then, I will just do the gluten-free diet and see how it goes. I just feel like it's so hard to follow the diet, especially with friends and family and at restaurants, that I would rather have a diagnosis so I can at least have it as *proof* for everyone who will surely think I'm making it up or being overly health-conscious or something... Does that make sense??

But it a diagnosis is not possible then I guess I will just do the diet.

Maybe I can get the doc to test for IgA and IgG (again).

Thanks so much for your help!!

After you have the complete panel done with the total IgA you could then just go gluten free. Being gluten free is not going effect the colonoscopy and will not interfere with any tests other than the one for celiac. The testing for celiac through biopsy is done on a microscopic level and many times damage can not be seen with the naked eye. Multiple biopsies need to be taken to find celiac. Your doctor doesn't even seem to have been looking for it or has no idea how to.

[Takala]

I don't have a formal diagnosis of being gluten intolerant, but since I have other auto immune problems that go along with being celiac, and I responded so dramatically to changing my diet back in 2003, I don't really care at all what "other" people think about my eating habits. It's much easier to eat this diet than to be sick all the time. As to the medical profession, when/if I see a new doctor, I tell them I am gluten intolerant, and I don't want a flare up, ( I get neurological symptoms and arthritic flares) so don't expose me to it, thank you. I don't care if they take me "seriously" either, as I can now explain what caused all the other things wrong with me, and why I am now much healthier.

Last year when I was having some really bad ob- gyn problems (since resolved) my PCP tried to get me to do a colonoscopy and I told him absolutely NOT because my symptoms did not match, and that I react much differently to medical procedures than a normal person- I needed a referral to an ob- gyn, NOT somebody making me deathly, horribly ill with a prep solution and then sticking a flashlight up my bum when the problem was with an ovary.

Since I am from the right ethnic groups to be gluten intolerant, and I'm much paler than the rest of my family, and I felt so much better on a gluten free diet, this was sort of a no- brainer for me to accept the possibility. I think about getting the genetic testing to see what DQ genes I very likely have, but then with the current health insurance fiasco going on in this country I'd rather be officially undiagnosed anyway until they get rid of the pre existing condition denial clause. Only in the United States can one get punished for eating a really healthy, not commercially manufactured diet.