Need Advice--should I Proceed Or Give Up?

[QueenOfPain]

Hello all, I'm a newbie here. Before I go into my ramblings... My main question is how long did it take for your Celiac symptoms to start disappearing after you began a gluten free diet? But I'd really like it if you had a few mintes to read about my history and tell me your opinions. Here's my story (btw, I'm currently 29-years-old).

* Not sure if this could have been what triggered my "possible" Celiac, but I had a really bad stomach bug when I was a kid. And about 2 months after that virus I started having really bad GI problems. I was 11-years-old. I had severe cramping on my left side. It hurt so bad I couldn't stand up straight at times. And I had bad, bad diarrhea. I also had a lot of heartburn, too. Also I remember getting mouth sores and having lots of headaches back then (which i still suffer from today).

* Went to the doctor and they said I had IBS. They gave me some kind of green pills and told my mom to keep me on a bland diet for awhile. And they had me drink Citracel (yuk). After a couple of years my symptoms weren't so intense so I went back to eating my beloved pizza, etc. I would still have problems with the cramping and diarrhea, but I guess I just got kind of used to it over the years.

* In my late teens I developed an odd migratory joint problem. But it didn't happen too frequently, so I just kind of shrugged it off. I also started developing tonsil stones around this age. (Not sure if that could have anything to do with Celiac.)

*When I turned 20 I began having migraines here and there. Also, at some point during my 20's I noticed I had a weird spot or two that would appear on my tongue from time-to-time. From what I've read on this forum--I think it might be a mild touch of geographic tongue, because it looks just like what I get--I just don't get it all over my entire tongue. It's usually just on the sides.

I finally broke down and went to the doctor this spring about my migratory joint problem (because it is occuring much more frequently now) every single blood test they have put me through has come back negative, EXCEPT for the Celiac panel. I had never heard of Celiac before! So, they sent me to a GI doctor to have an endoscopy and a colonoscopy. The biopsies came back negative. They even tested me for Chron's just in case and that was negative, too. My doctor advised me to take the Celiac blood test again after 3 months and see if it still came back positive. IT DID! This time I requested to see the actual results. Here they are:

TTG Antibody, IGA

<3 (<5 is negative)

Immunoglobulin A

175 (81-463 is normal range)

Gliadin Antibody (IGA)

29 (>17 is positive)

So, the two parts that detect damage are both negative, but the antibody part is positive. I'm pretty sure the first blood test I took probably had the same results. My GI doc said that the part I'm testing positive for is not very reliable for diagnosing Celiac. So, I decided to just try going on a gluten free diet. I've been on it for almost 2 months now, but I'm not really seeing any improvements yet. I still get mouth sores, headaches, bad-bad diarrhea, and the horrible joint pain. *sigh* The only symptom that has improved has been the bad side cramps I get--but that could just be because I'm not eating greasy fast food anymore. My doc said if I take the blood test again after being gluten free and it comes back negative that it would mean I do in fact have Celiac. But, on a lot of things I've read on the internet most people start feeling better after 2 or 3 weeks. I just feel like I should be seeing some changes here, but I'm not. It's very discouraging. I've always been skinny as a rail so being on a diet is really tough! I'm ready to give it up--especially with the holidays lurking around the corner. Any advice you could give me would be great. Sorry for the book!

[ShayFL]

Welcome to the board!

First, are you sure you are 100% gluten-free. It isnt as easy as it sounds and I glutened myself several times in the beginning accidentally. Check all medications (Rx and over the counter - you may have to call companies if they dont have it online), toiletries such as facial cream, shampoo, toothpaste, lip gloss, chap stick, etc. Does your mate eat gluten and then kiss you without brushing teeth? Did you replace old cutting boards, scratched Teflon pans and toaster? Are you living in a "mixed" kitchen where "flour" is used as that gets everywhere and is nearly impossible to avoid. Do you eat out?

And MANY Celiacs must cut out ALL dairy as well at least for a few months. The tips of the villi are where dairy is digested. You didnt have a lot of damage, but those very tips might need to heal. And the only way to do that is cut out dairy. A lot of folks can add it back in later after they are symptom free with no problems.

If you are 100% certain you are 100% gluten-free, then you may just need time for your body to heal. My migraines went away first and it was immediate. But it took quite awhile before I could see improvements in the other areas and I am STILL healing (6 months in). So be patient with yourself. You were eating poison for a lot longer than 2 months, so it stands to reason it could take longer than that to fully recover.

Hang in there, we are here for you!

[Mtndog]

Shay's advice is good- it took me a long time to feel better gluten free. I had to cut out dairy and soy at different points as well. It will take time but you've made a wise decision- gluten free is healthy.

[SGWhiskers]

I agree that you should review your possible cross contamination and other sources of possible gluten. You may also ask your doctor to test your blood for food allergies. I find that my constant canker sores are present with either dairy or gluten. I was tested several years ago for food allergies, and dairy and eggs were on my list.

I hope you feel better. Since you have the antibodies, you should keep on the gluten-free diet. If you don't improve, talk to your doctor and dietitian about other kinds of testing or possible food issues.

Wishing you well.

SGWHISKERS

[Fiddle-Faddle]

My symptoms improved immediately--BUT I was diagnosed quite soon after the most obvious symptoms appeared, so I suspect I had much less damage than you.

I also had a really tough time figuring out what was gluten-free and what wasn't, at least in the very beginning.

There are quite a few foods that LOOK like they would be gluten-free, but they have what we like to call "hidden gluten."

For example:

Rice Krispies (contains barley malt=gluten)

Corn Flakes (ditto)

deli tuna salad (contains bread crumbs)

most brands of soy sauce (contains large amount of wheat)

deli rotisserie chicken (marinated in gluteny soy sauce)

"lite" ice creams (thickened with wheat starch instead of cream)

crab Stix (contains wheat starch)

Chinese Food (made with gluteny soy sauce)

In addition, most restaurants season their meat with a spice blend that uses flour to keep it from clumping, and make their yummy sauces with flour, and cook their French Fries in the same fryer they just used to cook the breaded chicken in.

If you are producing an antibody to gluten, you shouldn't eat gluten, period. Healthy bodies do not produce antibodies to benign proteins. But it IS possible that you have celiac PLUS something else going on, like an additional food intolerance, or maybe a candida issue.

Dairy and soy are the most common additional food intolerances. Another possibility is that you might be eating a lot of gluten-free breads and snacks? Most of us here had to wait until our intestines healed before they could handle the gluten-free breads--those gluten-free flours are not easy for a damaged tummy to digest.

You might want to post a typical day's menu and see if anyone here can spot what might be either causing your symptoms or keeping you from healing.

Many medications contain gluten,too, as well as shampoos, lotions, etc.

[Asillem4]

My blood test showed a genetic marker for Celiac but the other parts of it were negative. Three doctors refused to consider me a celiac after that. Rather than try to get a doctor to order the small intestine biopsies, I chose to go gluten free without a diagnosis. I was also tested for food allergies. Of the 6 tests done (egg, corn, wheat, milk, soy, peanut) I am allergic to all but eggs. I also described my symptoms after eating certain foods and food combinations and the doctor suggested a sensitivity to raw onions and garlic as a possibility.

Be eliminating soy and corn from my diet (along with wheat, rye, barley, raw onion & garlic) I have almost completely eliminated heavy flow periods (?), skin rashes and acne, and the intestinal side of things. Now I KNOW when I've been glutened.

Do your best to not trust other peoples cooking. It seems mean but to preserve your own health and well-being you have to guard your intake. Other people who don't suffer negative physical effects from gluten exposure don't have any idea what 'a little' flour, rye, etc. or cross contamination can do to us. I have been wiped out for days by other peoples ignorant good intensions. I have even accidentally exposed myself by not being thorough enough in label reading or by assuming something is gluten free.

I'm pretty new to this ride. I wish you the best.

[QueenOfPain]

I am so glad I posted on here! Thank you all very much for your input. I was so close to giving up on this diet! I never thought about cutting out the dairy or even testing for food allergies. Nor did I think about the lipstick. I'll have to check into that. I'm pretty sure I've been good about keeping gluten out of my diet, but I do eat at restaurants from time-to-time. They provide a gluten free menu, BUT I know you can never trust that it's completely gluten free. It's just so hard to cook so frequently, especially when you have small children that are very picky eaters. I'm still learning what gluten free recipes are tasty and which ones are not so much. So, I'm having to prepare 2 different meals for the family.

For breakfast, I usually have eggs and Hormel Ready to Eat bacon, or fruit or on occasion make pancakes from gluten-free pancake mix.

For lunch it could be Hormel Natural lunchmeat rolled up with a piece of Kraft cheese with some Lays Stax chips. But, usually I just bring something that I cooked from scratch out of one of my gluten-free cookbooks. Normally it's a dish with meat, veggies, potatoes and sometimes gluten-free pasta.

For dinner, again usually something I cooked from scratch out of my gluten-free cookbook. Sometimes I do get the Amy's frozen dinners that are marked gluten free.

Besides fruits and veggies, I sometimes snack on Dove chocolate and Haagen Dazs (sp?) Dulce de Leche or Chocolate ice cream.

I don't eat a lot of gluten-free bread. I've made biscuits from cornstarch and xanthan gum a couple of times and brownies made from cornstarch. That's pretty much it.

Thank you all for giving me the confidence to carry on! I'll probably take the Celiac blood test again this December or January (3 to 4 months after going gluten free) to see if I still test positive or if it will be negative this time.

Thanks again everyone!

[Fiddle-Faddle]

Do you eat any fruits? Those would be very important, as they would be your main source of fiber, along with veggies. Fresh, raw veggies, like lettuce, carrot sticks, and raw red peppers are very good for you and easy to prepare.

I'd look for uncured bacon (no nitrites) and ditch all milk products for now () and see if that helps.

I remember reading complaints on here about Lay's Stax and Amy's gluten-free products as causing cc reactions in people here--apparently, though not using gluten ingredients, they are prepared on lines used for gluten.

Some people here are sensitive to eggs and/or potatoes. Potatoes are a member of the nightshade family, and that can cause problems for some (peppers are nightshades, too).

You might try keeping a food diary, and add one food back in at a time and that way you KNOW what you're reacting to.

[lizard00]

Just wanted to add my support.

It's hard in the beginning, and trying to figure out what is good or not. This month is my one year of being gluten free (YAY!), and I've gotten glutened my fair share. Just the other day in fact: a salad from a local restaurant.

I've eated it many times before, but that was time that got me. It's like roulette. For me, eating out has slowly become one of those things I used to do.

Gluten is hidden in a LOT of stuff. And I'm the only one in my house that is gluten free, so it's kind of tricky. You don't have to make your family get on the diet with you, but limit what you do cook for them that has gluten in it. I'll make my son a sandwich on wheat bread... no problem there. But I don't bake anything with regular flour in it. It gets in the air and you breathe it in and go from there and be sick. There's so many little things that need to be learned. Stick around here, this place is a wealth of knowledge!! Welcome!!