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Gi Appt Yesterday

Nyxie63

By Nyxie63
in Coping with Celiac Disease

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Nyxie63 Apprentice
Nyxie63
Posted

Sorry in advance for this being so long. I really need feedback on my GI appt yesterday.

I'm feeling very unsatisfied. Wondering if I'm right to feel this way or if I'm blowing things out of proportion. I don't trust my perceptions anymore.

*******

A little background -

Chronic abdominal pain in RUQ for 4 months now. It's not bad, but always there.

Tends to flare from time to time, around to back, up to shoulders, sometimes down abdomen to legs. Fats tend to provoke a flare, but not always.

Have a lot of food allergies re: recent testing. Intolerances to gluten, corn, dairy (casein), and sugar. (see my siggy)

Had endo/colonoscopy back in Sept. Biopsy for celiac negative (only took 2 samples). Diverticulosis and a benign polyp. Otherwise normal. No further testing for celiac.

Dx'd with candida prior to starting abx (for Lyme). Currently on candida diet, along with Nystatin and caprylic acid.

*******

Ok, on to the appt.

Got the ejection fraction from the Hida scan (gallbladder function). It was 68%. Ok, no problems there. (also had u/s and CT - no abnormalities, stones, sludge, etc)

I talked to him about the allergy testing. He was "amazed" that I tested so high for wheat but my celiac biopsy came back negative. Ummm..... <_<

I brought up the topic of Leaky Gut as a possible cause for all my food allergies, which he didn't want to pursue.... or even talk about further.

We did talk some about Lyme. He called it "Lymes" the entire time. Ok, no help there. To his credit, he did say that he thinks the abdominal pain might be from Lyme neuropathy. At least he knew that much.

I finally remembered to ask him about my low lipase level. His reply - low is good. I asked - but that low? My lipase was 21 (22-51) the last time it was tested. His reply - the lower the better.

He also said my problems weren't digestion-related.

He said there really isn't much more he can do for me. There are additional tests they could do, but he'd have to refer me to a dr in Philly for those.

He wants to see me again in 6 months.

Do you think I'm justified in wanting to find a new GI?

Do you think I should even bother with a new GI or just let this ride and see if the lyme and candida treatments will deal with the problem?

Any ideas?

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pinkscooby6 Rookie
pinkscooby6
Posted

Hi, I'm new to this site, and I just read your post. Now, I think you are absolutely right in wanting to find a new GI doctor. I'm in the military, and anyone who knows anyone in the military knows how most of the military docs are. They sit around playing guessing games, which happened to me before I met my doctor. It sounds to me like your doctor doesn't know what he is talking about. When you were tested for Celiac, were you already on a gluten free diet? Because if you were, than even if you do have Celiac, you would come up negative for the disease. I would suggest you go on a high gluten diet, and request the test again after a week or two of eating all the gluten. That is the only way to see for sure if you are a Celiac. But first, I would suggest you find a new Dr.

Sorry in advance for this being so long. I really need feedback on my GI appt yesterday.

I'm feeling very unsatisfied. Wondering if I'm right to feel this way or if I'm blowing things out of proportion. I don't trust my perceptions anymore.

*******

A little background -

Chronic abdominal pain in RUQ for 4 months now. It's not bad, but always there.

Tends to flare from time to time, around to back, up to shoulders, sometimes down abdomen to legs. Fats tend to provoke a flare, but not always.

Have a lot of food allergies re: recent testing. Intolerances to gluten, corn, dairy (casein), and sugar. (see my siggy)

Had endo/colonoscopy back in Sept. Biopsy for celiac negative (only took 2 samples). Diverticulosis and a benign polyp. Otherwise normal. No further testing for celiac.

Dx'd with candida prior to starting abx (for Lyme). Currently on candida diet, along with Nystatin and caprylic acid.

*******

Ok, on to the appt.

Got the ejection fraction from the Hida scan (gallbladder function). It was 68%. Ok, no problems there. (also had u/s and CT - no abnormalities, stones, sludge, etc)

I talked to him about the allergy testing. He was "amazed" that I tested so high for wheat but my celiac biopsy came back negative. Ummm..... <_<

I brought up the topic of Leaky Gut as a possible cause for all my food allergies, which he didn't want to pursue.... or even talk about further.

We did talk some about Lyme. He called it "Lymes" the entire time. Ok, no help there. To his credit, he did say that he thinks the abdominal pain might be from Lyme neuropathy. At least he knew that much.

I finally remembered to ask him about my low lipase level. His reply - low is good. I asked - but that low? My lipase was 21 (22-51) the last time it was tested. His reply - the lower the better.

He also said my problems weren't digestion-related.

He said there really isn't much more he can do for me. There are additional tests they could do, but he'd have to refer me to a dr in Philly for those.

He wants to see me again in 6 months.

Do you think I'm justified in wanting to find a new GI?

Do you think I should even bother with a new GI or just let this ride and see if the lyme and candida treatments will deal with the problem?

Any ideas?

Ursa Major Collaborator
Ursa Major
Posted

After you've been on a gluten-free diet for months, a week or two of gluten will inevitably result in another negative biopsy/blood work. You would need to be back on the equivalent of four slices of bread a day for at least three to six months to even have a chance of a valid test. For some people it would take a lot longer. NOT a good thing to do!

I agree that it may be time to find a new GI, though.

Nyxie63 Apprentice
Nyxie63
Posted
  • Author

Pinkscooby and UrsaMajor,

Thanks for your input. :)

I was eating gluten at the time of the biopsy. At that point, I hadn't realized anything about food intolerances yet. Just thought my stomach was being obnoxious. I did an elimination diet back in October and that's when the intolerances were found. I've been avoiding gluten, corn, and dairy ever since.

No other testing was done after that, even though I told my drs about the results of the elimination diet. One rx'd an epi pen and the other said "if it makes you sick, don't eat it". Yeah, thanks doc.

At this point, I guess it really doesn't matter if I have a dx of Celiac or not, as long as I know I'm gluten intolerant, as well as having a moderate allergy to gluten and a high allergy to wheat. That should pretty much keep me in line.

I think I'm really more concerned about the possiblity of having leaky gut and the chronic abdominal pain. There's a celiac-literate doc not too far from me. Will consider going to him if these don't clear up within the next few months. There's always the possibility that they're Lyme-related.

Thanks again for the advice and validation! :)

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