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Seeing Gi Tomorrow

Sheely

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Sheely Apprentice
Sheely
Posted

Briefly, I've suffered from a host of GI symptoms for as long as I can remember. I'm lactose intolerant, but despite a lactose-free diet, I still get stomach cramps, bloating, and occasional diarrhea. I have a history of a small gallstone or polyp (they're not sure which one) and elso endometriosis.

A few months ago, I went back to my doc, complaining once again of intestinal problems. I was also concerned because I had lost about 9 pounds and went down from a size 8 to a size 4 in about the span of one year.

My doc of course ordered another gall bladder ultrasound, nothing changed. He also ordered a few blood tests for Celiac Disease. The antigliadin AB IGA came back positive at 27, the the IGG came back negative, as did the tissue transglutaminase AB. My doctor told me that I should see a GI doc because my blood work was suspicious for Celiac Disease.

As I read about Celiac, it all started to come together for me. The intestinal symptoms, the fatigue, the bloating, the joint aches. I never understood why eating pasta made me feel so terrible. I would get so bloated and crampy after eating any type of pasta.

I see the GI doc tomorrow, but I'm feeling rather pessimistic about it. I just have this odd feeling that he is going to blow me off and tell me it's nothing, and not even bother to do more tests. I'm not anemic, I don't have dermatitis herpetiformis, only the symptoms and one positive blood test. The only other suspicion is being lactose intolerant, and having a borderline high MCH, pointing to a possible B12 deficiency. But it's borderline, so he will probably pass that off too.

Can anyone give me any tips on what to say to this doctor to make him take me seriously? It's a long story, but I have a neurological disorder that was misdiagnosed for almost 10 years, and I was passed off as being just a "depressed housewife." I don't want that to happen again.

Thanks,

Sheila

Maryland

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jenvan Collaborator
jenvan
Posted

Sheila-

It is easy to be pessimistic at times because often we do not get much from our doctors. However, there are some out there that are helpful. And many that are willing, but need to be "coached" by a Celiac :) If I was you, I would make sure my approach to the doc was respectful, but also confident and firm. You should be able to tell right away where he is coming from, and whether you will have to lead the conversation or he will. It is your right to push him to give you tests, even if he is doubtful. Explain the disease to him, and the connection of your symptoms to what others have experienced as well. Don't allow him to blow you off for borderline symptoms. I could have been diagnosed YEARS ago if someone would have payed attention to my borderline symptoms !

Good luck to you, and try to be hopeful. And if he turns out to be a jerk, there is always another doctor. ;)

PS--This link might help you be more knowledgeable about testing, etc. when you speak with him. There is another one I like, but I need to look for it. Good luck! Let me know how it goes...

https://www.celiac.com/st_prod.html?p_prodi...-49105173606.35

jenvan Collaborator
jenvan
Posted

Sheila- Here is some other misc. info that might be helpful...

"Initial screening for celiac disease is a blood test taken by your physician. The test can be referred to as a Celiac Panel or by the names of the individual tests. To provide the most accurate information,the blood test should include the following tests: anti-endomysial antibody (lgA EMA) and anti-gliadin antibody (lgA & IgG), and tissue transglutaminase (tTG IgA). These tests are very sensitive and specific for celiac disease. A gastroenterologist takes small intestine tissue biopsies if the results of the antibody test(s) are positive or he/she has a strong suspicion of celiac disease. A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing celiac disease. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet. It is possible, in some situations, to have normal blood tests and still have celiac disease.

Open Original Shared Link

After a diagnosis of celiac disease, a bone mineral density test should be performed to assess the condition of the bones. Reports have shown that between 50-100% of people at initial diagnosis of celiac disease will have osteopenia or osteoporosis. Ostopenia is thinner bones, usually less than 2 standard deviations from normal. Osteoporosis involves an even greater deviation from normal.. In Dr. Greens experience, nearly 100% of the celiac patients at diagnosis will have osteoporosis. If the bone mineral density is low, the patient should be referred to a bone mineral expert for assessment and specific individual treatment. For example, calcium and vitamin D needs will be addressed and monitored, and exercise and hormone replacement (in post-menopausal women) will be considered.

Children and other first-degree relatives should have their antibodies status measured. About 10-15% of first-degree relatives have positive antibodies, and the bulk of the people with positive antibodies will have the disease, even though 50% of those people will be asymptomatic, even with a flat biopsy.

What annual follow-up care should the celiac patient be getting? The most important thing is a good physical examinationBlood work should include measurements of folic acid, calcium, and iron, and antibodies testing. Bone mineral density testing should be repeated annually for those with abnormal results, and every several years for those with normal results. Finally, patients with celiac disease should have at least one follow-up biopsy, or blood tests after 6 mos and periodically following to confirm response--normalization of the biopsy sample. Patients who are non-responders, or whose clinical situation is somewhat confusing, may need more repeated biopsies at intervals. "

Sheely Apprentice
Sheely
Posted
  • Author

Thanks for your comforting advice, it's nice to hear from someone who's been there. Well I went to see the GI today, and he scheduled an endoscopy and a colonoscopy. He said that it's possible that I have Celiac, but he also threw irritable bowel in there too. I doubt very much that it's IBS. I would have thought that he would do further blood work, but he just went straight for the endoscopy.

He wants to do the colonoscopy also because I have endometriosis, for which I had a hysterectomy a year ago. He wants to see if there's any involvement in the large intestine.

So he gave me the prescription for Visicol, and holy cow!!! Combine that with the Dulcolax, and it's a total of 32 pills. Does someone really need that many laxatives??? I am so not looking forward to this!

I've been reading that you should eat alot of gluten before these types of tests, so I've been trying to do that. Of course it makes me feel so bloated and tired. Even my coworkers noticed it today. UGH!

Thanks,

Sheila

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