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How Do You?


emmybeans

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emmybeans Newbie

I'm pretty new to this. My Dr. is a flake! I've mentioned the possibility of celiac to him and he just says "hmmmm.." this after I've had years of stomach problems and no answers.....After reaing a lot of the posts here and doing some online research I'm convinced that this is what it is. I have been diagnosed as IBS -D and gastritis, Gerd and have also been experiencing achy muscles/joints, headaches, chronic diarrhea (sorry TMI) When I was pregnant with my last child I was found to be borderline gestational diabetic so I went to a nutritionist who put me on a very low carb diet. My symptoms were gone. Last year I went on an atkins like diet and all my symptoms were gone, and I lost 13 pounds pretty quickly. I find that every once in a while I can have bread, gluten whatever and it doesn't bother me, but if I've had too much it takes a long time to get it all out of my system, and one little thing (like the handful of pretzels I had yesterday) sends me into severe stomach pains. Does anyone have any ideas for quickly ridding the body of the negative effects of gluten? I'm having a really bad week and my stomach is killing me..I just want it to go away quickly!!! How do you get your mindset into not consuming gluten? Does that make sense? I feel like a heart patient or a dialysis patient that is supposed to be on a restricted diet but can't stick to it. I know what helps me feel better, but I hate not being able to eat my favorite foods!!!! Old habits die hard! Does anyone have a suggestion for a good book/cookbook? What do you eat for breakfast? When I was on the atkins like diet I had a great recipe for pancakes and crepes that was made with protein powder, but I can't find it. I used the crepes like bread for everything. I made a ton of them at he beginning of the week and either put tme in the fridge or freezer when I needed them. They are great with pb & low sugar jelly. Have all of you been officially diagnosed? What are the options for testing? I have been reading about a colon biopsy? (thanks but no thanks) along with blood tests. Do you have to be consuming gluten for the blood test to be accurate? Has anyone tried the saliva test? Ok I guess that's all my questions for now..sorry there are so many..I'm just amazed by all of this and glad that after knowing in the back of my mind that gluten was the culprit for years, that I've finally figured it out.


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KaitiUSA Enthusiast
Have all of you been officially diagnosed? What are the options for testing? I have been reading about a colon biopsy? (thanks but no thanks) along with blood tests. Do you have to be consuming gluten for the blood test to be accurate? Has anyone tried the saliva test? Ok I guess that's all my questions for now..sorry there are so many..I'm just amazed by all of this and glad that after knowing in the back of my mind that gluten was the culprit for years, that I've finally figured it out.

I have been officially diagnosed but there are some people on here that have not. You should get a complete celiac panel done which includes:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

Most doctors only order a partial celiac panel which can miss a diagnosis.

After the blood test they usually want a biopsy to confirm. The problem is if the biopsy comes back negative you can still have it and just not have damage yet.

The blood tests in my opinion are the best option and the tTG and EMA are very specific for celiac.

I was diagnosed with blood tests and a gene test.

You do need to be on gluten heavily for a good 3 months to get accurate testing.

Celiacs who do not follow the diet have 40-100 times more of a chance to get cancer,and other life threatening or disabling illnesses. (thats enough there to keep me in line) gluten=feeling like crap and damaging myself, no gluten=feeling good and no damage

It does sound like you have a problem with gluten.

If you have any other questions feel free to email or IM me. :D

jenvan Collaborator
Celiacs who do not follow the diet have 40-100 times more of a chance to get cancer,and other life threatening or disabling illnesses.

What Kaiti said is always enough to keep me on the diet. I think of greatly increased chances of lymphoma and picture myself with one of those colon-bags. "Yikes!" I think. (Sorry if that's crass!)

tarnalberry Community Regular
Does anyone have any ideas for quickly ridding the body of the negative effects of gluten?

How do you get your mindset into not consuming gluten? ... Old habits die hard!

Does anyone have a suggestion for a good book/cookbook?

What do you eat for breakfast?

Have all of you been officially diagnosed?

What are the options for testing?

Do you have to be consuming gluten for the blood test to be accurate?

Has anyone tried the saliva test?

1. Quickly ridding the body of gluten - nope, not really. In the case of a celiac, it's not so much that you still have gluten in your system as the cascade of chemical reactions that is your immune system is still running. You can do supportive things to help your body - eating easy to digest food, making sure to get plenty of rest, making sure to take your vitamins, staying hydrated, and so on. Other than that, you mostly need to let it run its course.

2. Mindset of not consuming gluten - I think about a) the symptoms that detract from my life if I do eat gluten, B) the increased risk of premature death, usually accompanied by painful, unpleasant conditions preceeding that premature death, c) trying to live with osteoporsis and anemia for decades and being miserable, and d) all the fabulous foods I can have. But you hit the nail on the head - "old habits die hard". Gluten - eating foods with it - IS just that, an old habit. There are some cultures that pretty much don't eat wheat, so it's not a problem for them to not eat it, but most of us are used to it, so it's a big change to cut it out. But habits can be broken, and new habits can be formed. It takes time - on the order of months - but you can do it by practice, practice, and more practice.

3. Good cookbooks - I like Open Original Shared Link myself, as I'm also dairy free. It's recipes and format suit my style and it has a good amount of generally useful information about speciality ingredients (e.g. which flours thicken well, which don't), but it does use some harder to find flours. Bette Hagman also makes a number of cookbooks that many people here like and I've found interesting recipes in two of her books: Open Original Shared Link and Open Original Shared Link. I also like Open Original Shared Link for general reference on many pre-packaged items and a few very good recipes.

4. Breakfast - oh, I have a wide range of things. Pancakes and waffles certainly aren't off the list, you just need to make them with gluten-free flours. My favorite is amaranth pancakes, and I like making waffles from a combination of amaranth, quinoa, and quinoa flakes. Most days I don't have time to cook pancakes or waffles, however, so I'll have things like rice cakes with peanut butter, or hot cereal made with soy milk and vanillan and cinnamon (hot cereal being any on of, or a combination of, the following: millet grits, Bob's Red Mill Mighty Tasty Cereal, buckwheat grits, quinoa flakes, soy grits, rice grits), occasionally Kashi's Cranberry Sunrise cold cereal, fruit smoothies, homemade energy bars, or left-over rice with soy milk and dried fruits and nuts. On the weekends, I may cook the pancakes or waffles, make muffins, have an omlette, or cook something less breakfasty. Breakfast need not be made of breakfast foods! ;-)

5. Officially diagnoses - I don't know whether or not my doctor has "officially" written it on my record, but my PCP did the blood test, saw the results (after two weeks gluten-free) come back inconclusive, suggested I do a gluten challenge, and said "guess you should stay off the gluten" when I told her that I definitely didn't feel well afterwards. My allergist doesn't really believe me (but I don't care), but the other doctor I see most often is "not surprised". I don't care to do an biopsy.

6. Options for testing - blood tests (relatively reliable, next-to-no chance for a false positive, definite chance for a false negative), biopsy (old-school gold-standard, relatively reliable for classic celiac disease, but the accuracy varies greatly with who read the slides and it won't catch very early stage celiac, or the varieties of gluten intolerance which don't seem to do significant intestinal damage), stool test (primarily through Enterolab, which isn't highly respected at wide in the medical community yet, but they're doing further research on the testing method), and dietary challenge (try the diet strictly, for two months, then try gluten - this is a real test, and it is technically an important diagnostic criteria (that most docs poo-poo) in determining gluten intolerance).

7. Consuming gluten for accurate testing - absolutely. The tests look for a reaction to gluten; if you're not consuming gluten, there will be no reaction. You need to have been consuming the equivalent of 2-3 slices of bread a day for approximately 3 months prior to testing for a reasonable confidence of accuracy.

8. Saliva test - haven't heard of it.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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