Misdiagnosed?

[nobigideas]

At the beginning of summer, two years ago, I began to have stomach troubles. Mostly localized pain that would come and go and tend to induce moderate diarrhea. My doctor did many tests, stool samples, etc. attempting to find the bugger responsible but by the time we had begun eliminating the possibilities, the summer had ended and I recovered. My bowel habits returned to normal and the pain ended. For 10 months I continued on in seemingly perfect health, if at least not 'healthy', then 'well' - no pain, no diarrhea, no unusual bowel habits, etc. That is, until the beginning of last summer, when once again the symptoms seemed to resume. At this point, my doctor, puzzled, decided to give me a blood test for celiac disease. The test came back positive, overwhelmingly so - or at least according to my physician. I had known a bit about celiac for a while so I understood what the diagnosis meant, however, I was at that time about to leave for France for the summer to live with a host family and the possibility of accommodating such a difficult diet just didn't seem likely, so I largely ignored the diet. I mean, I basically just didn't eat bread - continued to drink plenty of beer and eat plenty of meals that were wheat based - and well, I didn't get sick. Occasionally I would have stomach pains and diarrhea, but not daily, not even weekly. At the end of the summer, this past fall, I returned home and decided, for my general health, that I should go gluten-free. Now, I understand and understood exactly what that means so please don't explain the diet to me. But nonetheless I remained sick for nearly the entire year. In fact, my condition got much worse. I lost 25 lbs, had debilitating diarrhea and was even hospitalized twice for fluid loss. I was very strict with the diet, extremely strict. So eventually I saw a GI, long overdue, and we agreed that an enteroscopy would be a good idea just to eliminate the possibility that I had accidentally or purposely been ingesting gluten. The biopsy came back negative - perfectly normal and healthy, yet I had lost 25 lbs. in just six months. So I underwent a CT scan which largely revealed nothing and mostly confirmed that it was not a cancer of some sort. We then agreed to a colonoscopy, which occurred only last week and revealed a rather severe case of Ulcerative Colitis - and seems to have corrected the initial diagnosis and left me utterly confused.

I am wondering specifically what happens for those of you that have been absolutely diagnosed with celiac disease when you ingest gluten. I am eager to begin eating bread again because I think it goes a long way towards helping the colitis (being that it is dry and not acidic, like most of the food options celiacs are left with). I have, in the past two days had two sandwiches and had no noticeable change in bowel habits. If anything, they've improved extending the period between bowel movements and increasing the consistency.

I am wondering also, if any of you have been diagnosed with colitis or if you know or believe it is very likely that a patient suffer from both illnesses.

This has just been a very confusing time. Thanks.

[Matilda]

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[Guest nini]

I know several people with Ulcerative Colitis as well as Chrons... and while you may not have Celiac disease, I believe that Gluten Intolerance (as well as other food intolerances) are keys to what may be causing or triggering these illnesses. There are plenty of theories out there about this one, so please do lots of research... Since your blood tests previously indicated Celiac, more than likely you do also have Celiac and Colitis, and being on the Gluten free diet could have sufficiently healed your intestines so that by the time you had a biopsy there was nothing to be found. However, Colitis also involves inflammation issues and spasticity of the colon so you would need to alter your diet to accommodate these issues.

Some people are advocating the Specific Carbohydrate Diet as a way to treat Colitis and Chrons and even Celiac... keep in mind it won't cure you, but it can make your symptoms better.

[gf4life]

Since your blood tests previously indicated Celiac, more than likely you do also have Celiac and Colitis, and being on the Gluten free diet could have sufficiently healed your intestines so that by the time you had a biopsy there was nothing to be found. However, Colitis also involves inflammation issues and spasticity of the colon so you would need to alter your diet to accommodate these issues.

I agree. It is possible to have both and you would still need to follow the gluten-free diet, and do things to lessen the severity of your Colitis. Since they apparently didn't do the biopsy at the beginning of your diagnosis of Celiac they can't compare the two to see if the recent biopsy shows improvement, but a year on the gluten-free diet is plenty of time to heal any damage that might have been there.

Have they done another blood test for the antibodies? I they do and your levels are still high despite the gluten-free diet, then I would say it is possible the colitis is affecting the blood tests, but if they are drastically lower then I would say that you do have both conditions and need to stay on the diet.

Since you ate plenty of gluten while in France and only had periodic symptoms, then you can't use your reaction to gluten (or lack of one) as a diagnostic tool for figuring out if gluten is bothering you. There are many celiacs out there who have absolutely NO noticable symptoms when they ingest gluten, but the damage still occurs inside the body.

Please discuss this issue with your doctor. You might not have been misdiagnosed, only under-diagnosed.

God bless,

Mariann

[KaitiUSA]

Since your blood tests previously indicated Celiac, more than likely you do also have Celiac and Colitis, and being on the Gluten free diet could have sufficiently healed your intestines so that by the time you had a biopsy there was nothing to be found.  However, Colitis also involves inflammation issues and spasticity of the colon so you would need to alter your diet to accommodate these issues.

Agreed, sounds like you may have both. They do not diagnose celiac without proof so if you were diagnosed I would say you really do have that but maybe in addition to something else.