Waiting For Biopsy Results..

[Jaxita]

I came into the whole celiac thing in sort of a roundabout manner. I had some quite bad chest pain & ended up in the ER about 6 weeks ago, where they did a ton of tests on me (the pain was in the upper left quadrant so they were obviously concerned that it was cardiac-related). None of the tests were conclusive, though, so they finally discharged me & referred me to a cardiologist. While he did diagnose me with labile hypertension as a result of testing to see if he could discover the cause of the chest pain, the cardiologist came to the conclusion that the pain was not of cardiac origin & referred me to a rheumatologist. She is AWESOME & got a thorough history from me, pored over the ER tests for a couple of hours, examined me, & then sent me for a barrage of blood tests (13 of them..11 vials worth). The tTg IgA antibody test was positive ('normal' is 0-19 units, & mine was 29), so she referred me to a gastroenterologist. He said that just the results of the blood test gave me over 50% odds of having celiac disease, but he wanted to do a biopsy to be sure. I see him on Friday to find out the results; they did tell me that they'd seen duodenal inflammation, so something is funky in there. I decided to stop eating gluten after the biopsy, & my stomach hasn't 'been wonky' (as I called it) since then (and there was much rejoicing!), so I'm pretty sure I'm probably going to get a positive diagnosis.

In the meantime, I was also diagnosed with type 2 diabetes; between that and celiac, let's just say that life as I know it will never be the same. I'll spare you all the other problems that they found along the way..those are fodder for different forums.

Anyone else out there facing double diagnoses of diabetes AND celiac?

[ravenwoodglass]

I was diagnosed with both. Celiac first and then type 2 after I went to the doctor for help with a severe glutening. It was hard at first. In my case once the gluten issue was dealt with the type 2 basically 'went away'. Being ill can have a negative effect on our blood sugar levels. That applies, as far as I know, to more than just celiac. Once my celiac was under control by BS leveled out and my A1C tests and daily sticks all went to normal levels and have stayed there. I did get a good meter and tested both before and after meals. I would test at one hour, two hours and again at 3. That enabled me to see how what I was eating affected those levels and adjust my diet accordingly. I also got a good book on the glycemic index of foods and used that to plan my meals. Although the doctors pushed me to take metformin I chose to wait on that until I could see if I could get my BS under control with diet. The doctor only wanted me to do testing on awaking and take the pills and 'eat whatever I wanted'. I personally am glad I went with the multiple sticks and dietary changes.

[ocdsgirl]

I came into the whole celiac thing in sort of a roundabout manner. I had some quite bad chest pain & ended up in the ER about 6 weeks ago, where they did a ton of tests on me (the pain was in the upper left quadrant so they were obviously concerned that it was cardiac-related). None of the tests were conclusive, though, so they finally discharged me & referred me to a cardiologist. While he did diagnose me with labile hypertension as a result of testing to see if he could discover the cause of the chest pain, the cardiologist came to the conclusion that the pain was not of cardiac origin & referred me to a rheumatologist. She is AWESOME & got a thorough history from me, pored over the ER tests for a couple of hours, examined me, & then sent me for a barrage of blood tests (13 of them..11 vials worth). The tTg IgA antibody test was positive ('normal' is 0-19 units, & mine was 29), so she referred me to a gastroenterologist. He said that just the results of the blood test gave me over 50% odds of having celiac disease, but he wanted to do a biopsy to be sure. I see him on Friday to find out the results; they did tell me that they'd seen duodenal inflammation, so something is funky in there. I decided to stop eating gluten after the biopsy, & my stomach hasn't 'been wonky' (as I called it) since then (and there was much rejoicing!), so I'm pretty sure I'm probably going to get a positive diagnosis.

In the meantime, I was also diagnosed with type 2 diabetes; between that and celiac, let's just say that life as I know it will never be the same. I'll spare you all the other problems that they found along the way..those are fodder for different forums.

Anyone else out there facing double diagnoses of diabetes AND celiac?

Aren't the rheumatologists great? My son just had an endoscopy/colonoscopy the other day that we're waiting on results for, but they think it might be celiac. This was stumbled upon by the rheumatologist that he's been going to for his arthritis- which is mild and she felt it was connected to a bigger issue, so she ran a bunch of labs. He had a positive ANA, posivite tTg (56), and high IGA (346).

Even though those aren't fun diagnoses dietary-wise, it's a relief to know what to get to do to start feeling better!

[Jaxita]

The results are in: my villi are fine, so I don't have celiac, but I do have a gluten intolerance. So while the outcome is the same (can't have wheat), at least if I do get glutened it'll just make me sick rather than actually damaging me. And my gastro told me that I can try eating wheat every few months to see if I react to it, since he says that intolerances like this isn't always necessarily permanent..so we shall see how things progress. For now, I'm gonna keep on with the gluten-free thing, and continue to enjoy my stomach being happier with me than it has been in years!

[Skylark]

Your gastro is a little behind current thinking on celiac disease and it is not a good idea for you to ever eat gluten again. Markku Maki and others are showing that celiac disease is a process, progressing from anti-gliadin IgA to anti-tTG IgA to anti-endomysial IgA and villous damage. What you have is termed "latent celiac" by researchers. The more you expose yourself to wheat, the more likely you are to convert to being fully celiac with a positive biopsy.

Enjoy your happy stomach and I'm glad you're feeling better!

[ravenwoodglass]

The results are in: my villi are fine, so I don't have celiac, but I do have a gluten intolerance. So while the outcome is the same (can't have wheat), at least if I do get glutened it'll just make me sick rather than actually damaging me. And my gastro told me that I can try eating wheat every few months to see if I react to it, since he says that intolerances like this isn't always necessarily permanent..so we shall see how things progress. For now, I'm gonna keep on with the gluten-free thing, and continue to enjoy my stomach being happier with me than it has been in years!

Your gastro is misinformed. That thinking lead them to believe that children would outgrow celiac. They don't. You risk a great deal by taking his advice. Antibodies can attack any organ they choose to including the brain. Please don't think that it is safe to back to eating gluten. Keep you health and organs intact and just stay gluten free.

Also do get a hard copy of the biopsy report. Some gastros won't diagnose celiac unless the villi are totally destroyed. You may actually have villi damage but not enough for him to say 'yea that's celiac'.

[Jaxita]

Egads! Good thing I really had no interest in 'testing' the gluten thing..what the heck. He said that the biopsy reported my villi as 'normal' (he said that's the word they used)..I did ask for a copy of it to be sent to me as well as my GP and my rheumatologist, so it'll be interesting to see what it says.

On that note, anyone know of a good gastro in San Jose? Can't say as I feel comfortable seeing this guy anymore if he's actually recommending something that could end up damaging me, you know? I could see if it was a GP or someone who doesn't specialize in this stuff, but you'd think a gastro would make a point to be as up to date in his knowledge of these things as possible. Thank goodness for being proactive, for the internet, and for you fine folks.

[Skylark]

The research is really new. Don't beat your doctor up too hard! He is following the current standard of care. In our malpractice-prone medical system, thinking outside of the box is discouraged.

I went and looked and the studies and people who were followed for conversion to celiac had anti-endomysial antibodies (anti-EMA), another celiac marker. Here are the links if you are interested. One study followed children with anti-EMA and some developed villous damage later. The other followed adults with anti-EMA and mild biopsy damage that wouldn't really be called celiac (Marsh I) those on gluten-free diets reversed the damage, while all of the people eating gluten progressed to more damage on their biopsies. Here are the links if you're interested. (Every single participant in the adult study went permanently gluten-free at the end by choice!)

Open Original Shared Link

Open Original Shared Link

It's not clear where your anti-tTG would fit in. The current model of celiac disease is anti-gliadin -> anti-tTG -> anti-EMA and damage. Anti-tTG can show up in other autoimmune diseases, but since you feel better not eating gluten it's a good bet that it's showing up from an early stage of celiac autoimmunity.

You can probably work with your current gastro. Tell him you're trying a gluten-free diet since it helps your stomach anyway and see if he is willing to order a follow-up blood test for anti-tTG after you've been eating a strict gluten-free diet for six months or so. If the amount of antibody falls, you'll have your answer and you may even educate your doctor at the same time.

[lilbit]

Also do get a hard copy of the biopsy report. Some gastros won't diagnose celiac unless the villi are totally destroyed. You may actually have villi damage but not enough for him to say 'yea that's celiac'.

I whole-heartedly second that! I've only been diagnosed for about a week now, but my GI told me I didn't have Celiac EVEN THOUGH I had damaged villi! I had to take the pathology report to another doctor before I could get answers. Always! Always! get your labs. Blood tests, biopsy... everything.

You can google just about everything you read on the report and get answers. Wow... lol this lab result thing really gets me going

[RollingAlong]

Hopefully the gluten-free diet will bring improvement to your blood sugar levels. In the meantime, here are 2 helpful sites:

www.bloodsugar101.com

and the Bernstein Diabetes Forum (plenty of gluten-free diabetics there!)

Open Original Shared Link

[Jaxita]

Well the biopsy report said that my 'normal delicate villous architecture is maintained', so I guess I lucked out & they just haven't been damaged yet. Oh, and my rheumatologist (the one who had my blood tests done and sent me to the gastro doc to begin with) agrees with you wonderful folks..she thinks it's latent celiac disease as well, & agrees that eating gluten would not be a wise choice for me. So be it!

Thanks for all the responses and resources (and sorry for the delay in responding; my computer died & I've been trying to get the new one all put together).. you folks are the best! Guess I should head over to the post-diagnosis forum now..