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    Do you have questions about celiac disease or the gluten-free diet?

BMac

Do I Have It Or Not?

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Hi. I'm a brand new member and this is my first time posting. I must say though that this website is wonderful and I used it many, many times before I joined. Thanks to all of you who contribute.

Here's my issue: I tested negative for Celiac, but positive for gluten sensitivity -- well at least that's the best guess of my doctor. I did test positive for DQ2 and only partially understand what that means. Anyway, I figured the best way to see if I have a gluten sensitivity was to try the diet and see if my symptoms disappeared. But how long does it usually take to see significant results? I have been eating gluten-free for over a month --but of course I seem to make an error in food selection every 4 or 5 days -- thinking I was avoiding gluten but learning later it was indeed hiding in something I ate. So, in the past week I've been VERY careful and it seemed like my symptoms were improving, until today. I double checked everything I ate yesterday - and am still convinced it was all gluten free, so I'm not sure what to think.

I guess my questions are -- how do I know if I've given the diet enough time? What's the best way to totally control my diet for a short period of time to be 100% certain I'm not eating gluten (eat the same food every day for a week or so?) and if it's not gluten, how do I figure out what it is? I've been to the doctor enough times -- this is basically his best (and perhaps last) answer.

Thank you. I appreciate any advice.

Betsy

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HI. i am new here too. DQ2 is a gene of gluten intolerance. Whether it has developed into it depends if it has been triggered. You haven't mentioned what kind of symptoms you are having. From what I understand the diet takes time. I have been gluten lite for years- controlling a rash on hands by not eating wheat. My doctor even brought up celiac disease almost 5 years ago, but decided I didn't have cause I don't have chronic diarhea(sad mistake on his part). anyways, I was not ready yet i guess and now I am past ready. I decided not to get blood tested since I have been gluten lite for many years already. I too am trying the diet and thinking of the enterolab tests. Give the diet time, I have heard it can sometimes take months or even a couple of years(I hope not)

take care, good luck

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I guess my questions are -- how do I know if I've given the diet enough time? What's the best way to totally control my diet for a short period of time to be 100% certain I'm not eating gluten (eat the same food every day for a week or so?) and if it's not gluten, how do I figure out what it is? I've been to the doctor enough times -- this is basically his best (and perhaps last) answer.

Thank you. I appreciate any advice.

Betsy

Hi Betsy - you didn't say whether your symptoms were primarily of a GI nature, or rash (DH), or neuro/headaches/fatigue/brain fog. In my experience, different symptoms resolved in different amounts of time. I had many of the above. My cognitive symptoms lifted very quickly, within days. However, there were setbacks along the way as I continued to make mistakes with my diet. My elbow rash started changing right away but didn't disappear for several weeks, plus it would flare back up with my monthly cycles for a while, lessening each month until it finally went away (unless glutened). My GI symptoms progressed very slowly. Right away, I didn't have as many incidents where I would eat and then immediately need to use the restroom. However, I wasn't "normal" frequency for several months. I have been gluten-free for almost a year now. Prior to going gluten-free, I had started to lose a lot of weight because of "d" - about 25 lbs. After going gluten-free, I probably lost another 5 lbs. for a total of 30 lbs. before the damage healed and I was able to put some weight back on again.

Now that I'm "healed" (able to gain weight, normal frequency, etc.) I still have occasional symptoms similar to IBS. Sometimes I can correlate it to being glutened by cross contamination in food - because I will also get a headache, itchy elbows, mouth sores, etc., that point to gluten. I know other Celiacs who get GI symptoms only - and in a lot of ways, I feel lucky to have such definite symptoms to help me sort out when I have been glutened.

One thing I can tell you from my experiences is that gluten from cross-contamination is a VERY REAL ISSUE. I had terrible luck (and still do) finding potato chips and processed snacks that do not gluten me. So many processed foods give me slight (or severe) gluten headaches. When I get a really bad headache, then the next day I also get GI trouble.

While you are healing, focus on pure foods, safe foods. The purest foods are not processed. They are meats, vegetables, fruits, whole foods you can identify how they grew, etc. Foods that can be rinsed off before being eaten is my rule for "safe"! :)

Whenever I was having a bad week with symptoms that seemed like they came out of nowhere, I would back off all processed foods and eat only whole, identifiable foods. Sometimes I would make a crock pot roast with carrots and potatoes and live off that for dinner all week, eating fresh fruit and Hormel Natural Choice lunchmeats (labeled gluten free) at lunchtime. I also consider the little individual serving size of Musselman's natural applesauce a safe food - I have never been glutened by this.

If you have GI symptoms from gluten, then your intestinal villi are damaged and you probably have trouble digesting lactose from milk, also. If you give up milk or at least lactose for 6 weeks, you may notice fewer GI symptoms.

I know it's really hard to forego dairy and convenience foods for a while. However, if you start with a base of pure foods for several days to a week, then you can start adding in processed foods one at a time. Never eat the same processed food (like potato chips) several days in a row...I have found that a food that bothers me really badly the first day will cause less definite symptoms the next day - but after several days in a row I will feel sick and run down. By that time, I can't tell what is causing the problem and I have to back off to whole foods again until I can pin it down. I have learned to try new snack foods early in the day, by themselves, and watch carefully for symptoms.

It sounds complicated - but it boils down to being really aware of what you put in your mouth and how it makes you feel. If your symptoms are GI only and delayed by several hours (next day is common), then it may require some discipline to try new foods singly and slowly and watch for symptoms the next day.

It is SOOO hard but sooooo worth it if your health improves as a result. What feels really hard in the beginning will get easier and easier in time.

When you have a bad day with mystery symptoms, I highly recommend posting out to the Forum everything you ate in the 24 hours or so prior. People around here are so helpful and frequenly point out the hidden gluten in newcomers' diets. So many people slip up with gluten-containing foods like Rice Krispies or soy sauce - it's just hard to know everything at first.

Best of luck - April

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Thank you both for your replies. My symptoms appear to be only GI related. Frequent, loose stools - typically 5 to 7 a day (I go 3 times before I leave my house in the morning at 7:30!) - a lot of gas and flatulence, mild cramping, and D several times a month. I do not suffer from weight gain or weight loss - although I could stand to lose a few!

I keep reading in this forum how once people stopped eating gluten they felt better immediately. But, as I'm learning, it's different for everybody. I don't usually know if I've been glutened until the next morning. I usually feel great from about noon on every day - -it's the mornings that kill me.

I will try the "pure" food approach -- I'm sure it will be good for me! And you're right, not easy, especially since I don't cook much and am not a big fan of veggies. I love convenience foods - and was very happy to find several that are gluten-free (some Zone Perfect bars, Soy Joy). I was surprised to hear about potato chips (I eat a lot!) because I've read in many different sources that they're okay.

Thanks again for the advice and I'd better dig deep to find some discipline! :o

Betsy

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Potato chips might be ok in themselves, but it depends what has also been cooked in the oil. If it is guaranteed to only be for potato chips then you might be ok. There is always the possibility thought that the oil itself may have been contaminated with wheatgerm oil from some source.

It is a minefield. Whilst dairy (either lactose, casein, or both) is a very common antagonist, there are also other things that may trigger reactions. I have not been following gluten-free for long myself, and am still working through the intolerant foods which may take a while. So far I have found that I have an anaphylactic reaction to Apples (sometimes, although that may be due to acid build-up), and have intolerances to Dairy, yeast I think (I bought some gluten-free rolls, yuk, and had an allergic reaction to them!) and tannins (no tea or wine).

Eating pure foods is just the right advice. Anything unprocessed or without additives is usually safe. Once you have had a few weeks of just eating pure foods, organic if possible, meat, fish, veggies cooked or lovely high enzyme raw salads, fruit, and pulses/beans, you can then start to introduce new foods one at a time every 2 days to see what if any reaction you get. That way you will be able to build up a good diet repertoire.

I only started Monday, but already I am no longer getting the awful pain in my stomach every time I eat and the diarrhea has stopped. I don't know what the result of the blood test will be but the endoscopy will have to wait, I couldn't cope with the pain any more.

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I am also new to the forum today and have similar problems and questions. I have been using it as a resource as well.

My problems began December, 2005. I had a complete hysterectomy November, 2005 and right before Christmas began bloating to the point of looking pregnant. They thought I had internal bleeding. However, CT showed no. This continued. Almost a year later, I went into my primary doctor. She said why are you here. I showed her my stomach. She said, "You're pregnant?" Well, not quite. Anyway, she had a ultrasound done and CT done. That showed nothing except gallbladder problem. Sooooooooo, I had the gallbladder out. WONDERFUL..... I didn't realize how sick I was from that, but it didn't make the bloating quit. I had a colonoscopy done. Nothing again. So, I went home resigned to no one knowing what was wrong but ruling out the most egregious problems (colon cancer, cervical cancer (duh)) They told me maybe IBS and put me on meds. They helped some but not consistently. Anyway, I went back to the doc that put me on the IBS meds who truly insulted me telling me that at 43 I had lost muscle tone and maybe needed a tummy tuck. I would love a reason for a tummy tuck, but it sure won't make the little old ladies at the grocery store quit asking me when I'm due.

The other problems that I don't know if are associated are diagnosis osteoporosis at 40 (non-smoker), hypothyroid, headaches and itching on my elbow and wrist which, of course, no body wants to hear about.

Long story short, I began doing more research and found this website which has been a Godsend. I think I found the culprit. So, I went back to the doc and had the celiac blood screening done (even ate gluten before). They said, no. You don't have it. Well, my question for anyone out there is would my low carb diet (five years at least) possibly be why my blood doesn't show anything other than the following

Gliandin Ab IgA - <3

(tTG) AB IgA - <3

Immunoglobulin A, Serum - 41 (Low)

Other than the doc saying you don't have it, I get no reason for the numbers.

I really don't eat that much gluten due to my diet, but the new low carb flour tortillas, mixes, etc. have been a convenience.

My boyfriend, bless him for his support, said let's try the gluten free diet. He even is doing it with me. So far, I think it's working, too. I did have a recent problem after eating some peanut butter that didn't have gluten ingredients, but I think may have been cross contaminated by bread from use from others in the house.

Can anyone give me any guidance on what the numbers mean, what I should do next or how long to wait to see if the diet works? I'm at almost a whopping 2 weeks now, but I am pretty committed to finding something, anything, to put a label on this enigma.

I can't imagine eating wheat for six weeks before a test since I don't eat bread anyway and don't want the weight I worked so hard to get rid of with the low carb diet to come back.

I have, however, already developed a lot of low carb, gluten free recipes that I can share (cheesecake, blueberry tart dessert, etc.)

Thank you for any help.

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I am still trying to figure it all out to. I know my digestion is stabili

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oops. something went wrong on my reply. anyways.... Squeak, I know what you mean about not wanting to eat wheat for 6 weeks. I KNOW I have a wheat allergy. I have been dealing with it for 5 years now. I don't think my blood test my show any high marks cause of it, although I did continue eating gluten. So to answer your question, yes, the low carb diet is a possibility for lowering the antibody counts. Plenty of people have tested negative while eating lots of gluten also. It is not 100% accurate. The people who tested positive are lucky. It is strange how some of my symptoms seem to have stabilized, and some haven't. The worst is my body pain, which initially got better, but now is not. I hope I am not getting CC. My mood is a lot more stable though :) Good luck with the diet. It's only been a couple of weeks for me.

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Thanks for the reply. What I meant was that information I have seen is that to get an accurate blood test you have to be eating gluten supposedly three to six servings of bread a day to get accurate tests. I can't see doing that.

I really think that my low carb diet is helpful and might help others since low carb loses the wheat anyway. I'm a real foodie and invent recipes low carb all the time. Now, I'm already inventing low carb and gluten free. For example, I have this great blueberry dessert that used a low carb milkshake mix for the crust. I ate it weekly, but I now find that the mix has wheat. My fix is to make the same thing with a almond crust. Now, new dessert, great taste, no bloated belly. This is doable. I just hope it's what's wrong. I'm so sick of not having some category to put everything in and so I can fix it.

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