New With Questions

[Paigie]

Hello,

I'm in the process of being tested for celiac. My blood test for endomysial IgA Autoantibodies was normal, however the gastro doctor I'm now seeing wants to check further for celiac which will be an endoscopy July 18th.

I do get a rash on my lower forearm that comes and goes without rhyme or reason that looks similar to the pictures I've seen for DH (Dermatitis Herpetiformis), other than that I don't have the typical symptoms, so I'm confused.

I suffer from constipation, bloat, weight gain and the inability to lose weight though I've eaten low carb/no sugar for years. The weight gain is something new over the last couple of years even staying true to low carb and exercising, this seems to be the opposite of what celiac should produce.

Last year I tried a gluten free diet though it was only for a couple of weeks and noticed no difference.

Is it out of the question to gain weight and have celiac disease? And for those who bloat, is it in the upper part of the abdomen?

Thanks for any suggestions or input, it will be greatly appreciated.

[loraleena]

To both your questions - yes and yes. A couple weeks on the diet is not enough time to see change. It took me several months.

[Nantzie]

Oh my gosh yes!

Finding out about celiac answered so many questions for me with unexpected weight gain a couple times in my life.

About ten years ago when the whole low-fat diet was THE way to lose weight, my stepmom had lost a ton of weight on it. She is such a good cook and she made the BEST low fat food. At the time I was 125 pounds and still eating like a teenager and knew that I needed to start to make a change and eat like a grown-up. I didn't want to lose any weight, but I did want to eat healthier than eating junk food and fast food all the time. I started picking her brain on low-fat cooking. Not only did she show me how to cook meats and veggies, she showed me how I could make pasta meals low fat, whole-wheat bagels, etc. At the time I was working 12-14 hour days, so pasta and a simple salad was a mainstay, as was the healthy low-fat bagel for breakfast.

I gained 25 POUNDS in three weeks.

On the low-fat diet.

Yea.

That was my first clue that there was something not quite average about my body.

I went back to eating my junk food / fast food, stuck at 150, and about six months later, I lost the 25 pounds just as suddenly as I had gained it.

Looking back on what my favorite foods were at that time in my life, alot of it was gluten-free (other than small amounts or cross-contamination) - Cool Ranch Doritos, chips and salsa, Taco Bell (most not gluten-free by the way), cesar salad, a thing called Little Joe's Special (hamburger, onions, spinach, eggs and parmesan cheese). Even the candy I like; Butterfingers, Reese's Cups, hard candy, plain dark chocolate is gluten-free. Somehow my body must have known what I needed. It wasn't healthy in the classic sense, but was much healthier for me than the "healthy" that was being discussed at the time.

Once I found out about celiac and went gluten-free about seven months ago, I've slowly lost 20 pounds. I was up to 186, and now I'm about 164. More than I'd like to be, but I'm starting to feel cute again.

All that, and I don't technically have celiac. Negative blood tests, no damage on biopsy. Just a very positive change with gluten-free diet. My advice for anyone who think they might have an issue with gluten is, no matter what the tests say, give the gluten-free diet a shot. If that doesn't help, explore the idea of another food causing issues by keeping a food/symptom diary. Take a look at my signature line (okay paragraph...) for more.

Nancy

[CarlaB]

If you are gluten-free it can affect your biopsy -- you need to be consuming gluten! Also, if you get dh on your arm, you might want to have the skin near the blister to be biopsied rather than the intestine. A diagnosis of dh is a diagnosis of celiac. I think you need to go to a dermatologist for that, so your GI wouldn't necessarily suggest it.

[Paigie]

If you are gluten-free it can affect your biopsy -- you need to be consuming gluten! Also, if you get dh on your arm, you might want to have the skin near the blister to be biopsied rather than the intestine. A diagnosis of dh is a diagnosis of celiac. I think you need to go to a dermatologist for that, so your GI wouldn't necessarily suggest it.

Thanks for your input.

Right now is one of the times for no reason I can explain, the rash is gone. I never know when it will come or go, so I'll have to have the other biopsy... just my luck.

And thank you for letting me know to not go gluten free til I've had the biopsy. Would you suggest not going diary free til then as well?

Thanks again for your help.

[Paigie]

Oh my gosh yes!

Finding out about celiac answered so many questions for me with unexpected weight gain a couple times in my life.

About ten years ago when the whole low-fat diet was THE way to lose weight, my stepmom had lost a ton of weight on it. She is such a good cook and she made the BEST low fat food. At the time I was 125 pounds and still eating like a teenager and knew that I needed to start to make a change and eat like a grown-up. I didn't want to lose any weight, but I did want to eat healthier than eating junk food and fast food all the time. I started picking her brain on low-fat cooking. Not only did she show me how to cook meats and veggies, she showed me how I could make pasta meals low fat, whole-wheat bagels, etc. At the time I was working 12-14 hour days, so pasta and a simple salad was a mainstay, as was the healthy low-fat bagel for breakfast.

I gained 25 POUNDS in three weeks.

On the low-fat diet.

Yea.

That was my first clue that there was something not quite average about my body.

I went back to eating my junk food / fast food, stuck at 150, and about six months later, I lost the 25 pounds just as suddenly as I had gained it.

Looking back on what my favorite foods were at that time in my life, alot of it was gluten-free (other than small amounts or cross-contamination) - Cool Ranch Doritos, chips and salsa, Taco Bell (most not gluten-free by the way), cesar salad, a thing called Little Joe's Special (hamburger, onions, spinach, eggs and parmesan cheese). Even the candy I like; Butterfingers, Reese's Cups, hard candy, plain dark chocolate is gluten-free. Somehow my body must have known what I needed. It wasn't healthy in the classic sense, but was much healthier for me than the "healthy" that was being discussed at the time.

Once I found out about celiac and went gluten-free about seven months ago, I've slowly lost 20 pounds. I was up to 186, and now I'm about 164. More than I'd like to be, but I'm starting to feel cute again.

All that, and I don't technically have celiac. Negative blood tests, no damage on biopsy. Just a very positive change with gluten-free diet. My advice for anyone who think they might have an issue with gluten is, no matter what the tests say, give the gluten-free diet a shot. If that doesn't help, explore the idea of another food causing issues by keeping a food/symptom diary. Take a look at my signature line (okay paragraph...) for more.

Nancy

Nancy,

Thanks so much for your detailed explanation of your experience, it helps greatly.

I had gone up to 142lbs from my normal 110lbs in 2000 when I decided to do low carb and no sugar, I went down to 108 at one point, but on low carb you don't eliminate wheat, just the bad carbs. When I was very, very strict I wouldn't eat any form of wheat and when I re-introduced carbs from whole wheat the weight gain started, but not right away.

I've been eating low carb ever since 2000, but not as strict as at first, so I'm wondering if I'm doing what your body has done?

I've got back up to 146lbs and on my barely 5'2" frame it shows. The bloat only makes it look worse, if I wasn't post meno you'd swear I was pregnant!

Now, if I could only loose weight eating doritos and Reese's peanut butter cups, (my two very favorite snacks! (LOL)

I've been advised not to go gluten free til after the biopsy which is scheduled for next week, but after that I plan on doing just that to see if it will help.

I can't imagine what on earth I'll be able to eat to lose weight while giving up gluten and dairy. I'm not looking forward to it at all.

Thanks again for all your help.

[CarlaB]

Thanks for your input.

Right now is one of the times for no reason I can explain, the rash is gone. I never know when it will come or go, so I'll have to have the other biopsy... just my luck.

And thank you for letting me know to not go gluten free til I've had the biopsy. Would you suggest not going diary free til then as well?

Thanks again for your help.

I don't think the dairy will matter one way or the other since the biopsy checks for damage done by gluten.

[Paigie]

I don't think the dairy will matter one way or the other since the biopsy checks for damage done by gluten.

Okay, thanks.