Not Celiacs?

[prana]

Hello all, I'm hoping you can help me with something. I've been sick since I was 15 (now 25) with classic Celiac symptoms. I was diagnosed with many things over the years including Chronic Fatigue Syndrome and IBS. Every diagnosis was based on the doctors opinion and no tests were run or medications tried. I was sent home to just deal with it. Finally last year I cam across this website and realized I may have Celiacs. I tried an exclusion diet and the minute I added bread back in I got terribly sick. Since then I have been gluten free and only get sick when I accidently eat something with hidden gluten.

My trouble is recently I've been very sick again and I know I haven't had any gluten. We moved to a new larger place and I bought a new bread machine and lots of stuff from the gluten free pantry. I was very excited to finally get to have cookies and bread and pancakes again but I only ate a small amount every other day just to see how things would go. As soon as I started eating these things I got very sick. I've noticed that anything, whether it's wheat based or not, that is gluey or becomes gluey when eaten (think bread, oatmeal, real mashed potatoes, rice pudding, etc) makes me very sick (ie cramps, hot flashes, bathroom problems). So now I'm very confused. My new doctor says she has her doubts that I have Celiacs because I'm overwieght (I also have liver disease, hypothyroidism and lots of allergies) and now that I'm getting sick on foods without gluten I'm begining to wonder myself. I was actively sick and eating gluten for ten years so maybe my intestines and stomache are so damaged that I can't handle any gluey food? I just don't know and I would like your advice, suggestion and thoughts especially if you have the same problem.

Thank you very much for your time. Good luck and blessings, Prana

[KaitiUSA]

My trouble is recently I've been very sick again and I know I haven't had any gluten. We moved to a new larger place and I bought a new bread machine and lots of stuff from the gluten free pantry. I was very excited to finally get to have cookies and bread and pancakes again but I only ate a small amount every other day just to see how things would go. As soon as I started eating these things I got very sick. I've noticed that anything, whether it's wheat based or not, that is gluey or becomes gluey when eaten (think bread, oatmeal, real mashed potatoes, rice pudding, etc) makes me very sick (ie cramps, hot flashes, bathroom problems). So now I'm very confused. My new doctor says she has her doubts that I have Celiacs because I'm overwieght (I also have liver disease, hypothyroidism and lots of allergies) and now that I'm getting sick on foods without gluten I'm begining to wonder myself.

First, I noticed you said oatmeal? Oatmeal has gluten in it so that would be on the no list. Anything with wheat,rye, barley, or oats. Oats in the US in highly contaminated with wheat.

Second, I would recommend a new doctor. Some celiacs gain weight instead of lose it. There is no profile of a celiac because there are over 200 symptoms associated with celiac and everyone is different. Alot of doctors do not know what they should about celiac and this doctor seems like one of the ill informed.

The things you are saying you have...hypothyroidism, liver disease.... are connected with celiac.

I have graves disease(hyperthyroid) and thyroid disorders are very connected.

Also have you checked lipsticks? Alot of them have wheat starch. Cosmetics, shampoos, lotions, and pretty much everything you put on your hands,face, and head should be checked because they can easily get into your mouth.

The only way to find out now if go on gluten heavily for about 3 months . This is one reason why it is recommended to get tested before going on the diet.

The following blood tests should be done if you decide to go this way:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

[Darby]

Do you start feeling sick right after eating and sometimes during your meal? Do you feel nauseaus?

Another test, have you ever had an ultrasound done on your gall bladder?

Some people will have pain where the gall bladder is during an "attack", but some don't.

Just another thought.

[SabrinaLuvsGluten]

Another thought, dont you have to use milk to make all those things? Could you possibly have a problem with milk? Just throwing that out there...

Sabrina

[Carriefaith]

If you do have celiac disease, then your damaged intestines just may need more time to heal. This would mean that some gluten-free foods may upset your stomach for awhile until you get better, especially dairy products. Gluten damages the parts of the intestines that absorb nutrients and break down sugars. If the damage to the intestine from gluten is severe, than you may not be able to digest sucrose, lactose, and maltose. This would include dairy products, foods high in starch (eg. potatoes and corn), and foods high in sucrose. Once the intestine heals, your body should be able to handle these foods better.

[pixiegirl]

I can relate to your story because I was diagnosed with Chronic Fatigue Syndrome and IBS prior to finding out the gluten is my problem. I may have those other issues, I don't know, but I do know for a fact that I am Celiac.

People can have a variety of allergies and sensitivities and I'm not sure if this is accurate but it seems like people with Celiac have more then the rest of the general population.

I don't think Celiac is related in any way to weight, too much or too little of it... after reading these boards for months and months I can tell you for sure, there are skinny celiacs, there are overweight celiacs and there are just plain old average celiacs. You have to keep in mind that very few people in our medical community really know much about celiac. You have to go out and learn about it and try and educate them.

I seem to have issues with some other products, I've not been able to narrow it down to a particular ingredient but some products bother me in a big way (for example, La Choy soy sauce.. I can eat other soy sauces and La Choy is supposed to be gluten-free but when I eat it I'm sick right away).

What I did was go on a strict restrictive diet for a few days of things I know I can eat.... rice, grilled meats and fish, potatoes, bananas, apple sauce. I do this for maybe 3 or 4 days until I start feeling really good and then I add stuff in.... broccoli... melon..... gluten-free ginger snap cookies.... and as long as I don't get sick, then I figure I'll eat it. Yes this can be a pain, but for me it quickly eliminates food that I can't handle.

PS - oatmeal has gluten in it.

Susan

[prana]

Hello again,

First thanks a million for the advice, I'll discuss it with my doctor. She really is a nice lady and even if she wasn't I live in a very small and secluded town so I don't have a lot of options as far as doctors. Next appointment we will seriously discuss it and see what we need to do to find out once and for all what is the cause.

Second I don't eat oatmeal or drink milk. It's my fault, the way I said it was confusing. I just wanted to point out the consistancy of foods that make me sick and oatmeal is gluey. I do eat dairy but not very much as I'm lactose intolerant and to much makes me sick, I use soy milk or rice milk for pretty much everything. Also I don't eat msg, caffiene or processed foods. Everything I eat is very carefully checked and almost everything I eat is made by me from scratch. So there is no possibility of hidden gluten. And I don't wear makeup because of my other allergies to chemicals.

I did have a colonoscopy and they didn't see anything but that is only for the large intestine and I know most damage in a Celiac's patient is in the small intestine. So maybe I need to have those tests done (even if it will be torture for three months) and maybe I need to have my small intestine checked. I just wanted to make sure I wasn't crazy because it really upset me to get sick off gluten free foods. If it weren't for the fact that I can eat other gluten free foods just fine (like soup, salad dressing, etc) I would have thought I was allergic to rice but it is only the bread based stuff.

Anyway, thank you again and I will let you know how things go. Good luck and blessings, Prana

[mommida]

You sound confident that you are gluten free - Are you sure it wasn't the guar gum or xanthan gum causing the problem? Those are gluten-free version of gluey texture. Eggs? Egg white protein? Keep a food diary.

I switched to a brand of vanilla that lists itself as gluten free, 100% pure vanilla, and voila - no more unexplained tummy rumbles. Before anyone jumps on my case - I'm NOT saying that vanilla has gluten - just that I had a problem with a cheaper brand of vanilla, (Tone's) and I prefer an organic brand more.

L.