Fat/mental & Celiac?

[Cag]

After reading many, many, weblinks across the internet I was under the belief that someone can be overweight and have celiac disease. Causes COULD include since the body does not get it's full nourishment that it thinks it is continually hungry in attempts to gain the nourishment and so ensures the vicious cycle of being hungry and not receiving the effects of food from nourishment.

I am quite dissapointed today after seeing a "specialist" that told me I'm not malnourished since I am overweight and can not be full-blown celiac.

I have also read that along with the inflammation in the intestines from the allergic autoimmune (celiac) disease, there is inflammation that occurs in the brain which can cause emotional and mental issues.

The "specialist" also did not seem to think that the gluten-free diet I had started myself on was probably not fully gluten-free because I had not met with a dietician yet, and that the gluten free diet would not make a very noticeable difference in my emotional and mental status as I believed have happened.

At this point I am pretty upset and distraught about what to believe and need some hopeful insight.

Thank you.

[celiac-mommy]

Sounds like you need to find another "specialist" You can certainly be overweight and have celiac, you can be malnourished and be overweight. We NEVER saw a dietician/nutritionist. I did a lot of research on the web and with a little help from our GI-very little-we went gluten-free immediatly. Get a list of safe foods, stick with fruits, veggies and lean meats. Clean out your cupboards and refrigerator--all the bottles and jars that have been double dipped into. Get new wooden spoons, anything with a wooden handle, scarred up pots and pans, etc, anything that could cause cross contamination. Basically start from scratch. You don't have to throw out all your dishes, just pay attention to anything that has tight corners, folds, scratches or is poreous (sp?). Look in your medicine cabinet, shower, make-up (??)-anything that could get near/in your mouth. It's overwhelming at first, but take one step and one day at a time. If you go gluten-free, go 100%. But you might want to find another Dr who treats patients with celiac disease!! Use us, use the internet, books, support groups, whatever you need! You'll find a great group of people here, I know I did! Good luck to you!

[tarnalberry]

unfortunately, many doctors are not up to date on celiac disease, or any of the non-immediately-life-threatening medical food issues. they get a couple hours in med school, apparently, from what we've heard by folks training for the field here on the board, to cover nutrition. woo-hoo. :/

the NIH report on celiac disease itself states that being overweight is perfectly possible with celiac disease, as is depression and other psychological issues.

[frec]

I think the least useful person I've seen about my celiac disease was my gastroenterologist. Sure, he could do the endoscopy and diagnose me but that was the only useful thing he's done in the last five years. I agree that you need to see a new doctor, and I would recommend a naturopath if you can find a good one, or someone who really knows about nutrition. There is research showing that some celiacs are overweight; they crave nutrition they are not getting and they overeat. I've lost weight since I was diagnosed, and I haven't dieted. I just don't seem to want to eat junk as much (and celiac makes it hard to eat junk as well!) There is also research showing a correlation between depression and celiac. Some people get depressed as a symptom of being glutened. Some people (like me) become depressed due to nutritional gaps from poor absorption. There are tests for neurotransmitter levels (mine were very bad) and for vitamin D3 (mine was very low) and both can affect mood. Now that I am gluten free and on supplements I am much better.

[Cag]

Thank you to the three replys.

Yes, I have already been reading about, talking to celiac people, and went to a '101' newbie class. Had already gone gluten free with everything. I have read every label in the house and every label of anything I previously (normally would have) used for cooking. I have run to the computer multiple times to check on ingredients to verify safety for celiac disease. That's why I was pretty put-out that he seemed to think (without quizing me) that I was not 100% gluten free. He didn't try to verify with me whether I had read labels or verified ingredients; he just assumed I was incapable of doing it without spending more money to see a dietician.

Without naming, names, he is a doctor on the celiac list. That's why I chose to see him. I thought he would be up on the latest and less common symptoms. I guess I was wrong. He did request my biopsy slides to review again. He has requested the Endomysial antibodies and Tissue transglutaminase tests be checked again, but did not request the IgG AGA, IgA AGA, or the DNA tests. Wouldn't it make sense to run those too if I have to eat gluten for a few days so I can get everything done at once? I really think that the DNA test would give great insight and think I will contact him about adding that test.

Thank you for any further insight.

[Nancym]

unfortunately, many doctors are not up to date on celiac disease, or any of the non-immediately-life-threatening medical food issues. they get a couple hours in med school, apparently, from what we've heard by folks training for the field here on the board, to cover nutrition. woo-hoo. :/

the NIH report on celiac disease itself states that being overweight is perfectly possible with celiac disease, as is depression and other psychological issues.

I heard it was like 11 minutes on the average. :\

[ENF]

Thank you to the three replys.

I really think that the DNA test would give great insight and think I will contact him about adding that test.

Thank you for any further insight.

I have both celiac genes. I got the test a year after diagnosis by endocopy and blood tests.

I believe that most people who have celiac DNA do not have active celiac disease, as in noticable or measurable symptoms. It's interesting to know whether you have a genetic factor, but remember that it's not ironclad proof that your symptoms are due to celiac. Many people that have gluten sensitive genetic factors have worse symptoms than some people with celiac genetics.

[mftnchn]

I am surprised that this doctor was listed as a celiac-knowledgeable doctor. You are much more informed than he is.

The nice thing is we can treat ourselves for celiac disease, since it is a personal choice to eat gluten free. We don't need a doctor's confirmation.

Also, after being already gluten free (how long has that been?) you run a high risk of your tests being negative even if you go back to eating gluten.

If you want more test confirmation, you can order your own gene testing done; of course your insurance may not pay it. You can also do what many of us have done and order Enterolab testing.

I did that on a whim--looking for the cause of constipation. I am overweight too. My tests and genes all came back positive, I am a double DQ2. By the time I got the results I was overseas for work for 10 months so my doctors just told me to go on the diet and I had no further tests (blood or biopsy). You can see my Enterolab results in my signature. I just did a repeat stool fecal fat test, and I went from severe malabsorption to <300 (normal). I am 10 months gluten free.

I have gradually lost weight after going gluten-free, but have still eaten a lot of treats made with gluten-free flours. In the past, I never lost weight unless eating very low carb, but now I have.

My doctor tried to explain it, something about the mitochrondria in the cells; I told him it was like my body thought it was starving and was holding on to every bit of food it could get. He said, "Exactly." My vitamins, minerals, and amino acid levels are still low, but I am making progress.

It is nice to have a doctor's support, but you can still do it yourself.

[Cag]

The doctor told me that I only need to eat gluten for 2 or 3 days before taking the tests. Does this sound right?

[kbtoyssni]

The doctor told me that I only need to eat gluten for 2 or 3 days before taking the tests. Does this sound right?

No, that sounds completely wrong. The several estimates I've seen are you have to be eating about four servings of gluten for 3-6 months to get a positive. But if you've been gluten-free for a while, even that might not be long enough to damage your intestines enough to get a positive biopsy. You will irritate your intestines in 2-3 days, but you will not be able to wear away at the villi enough to show on a scope. If you're doing a blood test, you have to build up enough antibodies in your intestines and then have enough of them start leaking out of the gut into the blood stream to get a positive. Many of us were sick for years and still didn't get a positive blood test or scope. I had mild symptoms for nearly ten years and was very, very sick for 7-8 months and didn't get a positive blood test.