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CMCM Rising Star

I've been gluten free (trying) since the day after Thanksgiving. Although I don't intentionally eat anything with gluten, I'm sure I've gotten some thru additives or some such. I'm also trying to work out what other sensitivities I may have. Dairy, for example, has always seemed to bother me. I don't know if that is all on its own, or as a result of untreated gluten sensitivity/celiac. I also cut dairy out at the same time as gluten.

Yesterday, missing my cappuccinos with milk, I tried using soy milk. By the end of the day I had gas, so maybe soy just doesn't agree with me either. I was never one to eat soy much, so this was an unusual experience for me with the soy.

Tonight I ate out....steak and veggies only, but the sauce may have had some flour/gluten, I didn't ask. Now, 4 hours after dinner I feel horribly nauseated. Is this a common reaction to gluten? This has happened before....not all the time, but occasionally....usually a few hours after eating I'd get terrible nausea for an hour or more. On other occasions I woke up in the middle of the night with terrible nausea, a good 8 hours after eating. I don't know what to make of all this. I'm beginning to think I can't eat much of anything any more. I'm pretty much decided to do the Enterolab testing, but now I'm wondering if I should also test for soy, dairy, egg???


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MySuicidalTurtle Enthusiast

You really need to make sure you are 100% gluten-free because a little bt of gluten is just as bad as a lot. Ask before you eat things so that you don't get sick! If you are getting tested test for everything just so you knwo what to avoid. Good luck!

kabowman Explorer

Find out the gluten first - I went on a strict meat and veggies diet for a week or two, after I had fully eliminated the gluten for over a month and then started to notice the symptoms that came wihen eating other foods, then started to add stuff back in--no sauces or condiments until you identify which ones you can eat. If you really think there are other intolerances, this will help identify those but really, make sure about the gluten first if you really suspect it, like your soy. If I suspected anything, I would then eliminate that for a week then try just that again and watch my reactions.

Also, make sure there is no cross contamination, using clean, non-contaminated skillets and utensils, and keep your stuff separate (if there are othe people in the house); for example, I have my own jelly, spreads, sauces, etc. so there is no risk of anyone dropping crumbs into something I might eat.

My reactions to most of my intolerances are similar except for yeast - that one messes with my mind too and literally knocks me out cold for several hours and then I am groggy for days.

darkangel Rookie
Dairy, for example, has always seemed to bother me. I don't know if that is all on its own, or as a result of untreated gluten sensitivity/celiac. I also cut dairy out at the same time as gluten.

People who are sensitive to gluten often have problems with casein, too... the protein in dairy.

jerseyangel Proficient

All the advice above and I would stress that you need to make sure all the gluten is out of your diet and any product you use on your body. The sauce on the steak should have raised a red flag, for example. I know it's a pain at the beginning, but you have to check out everything that goes into your mouth. The nausea, in my experience, is definately a reaction to the gluten. Actually, I find as I am healing, nausea is more of a problem with an accidental glutening than D. You may want to hold off on the soy and dairy until you get the gluten out completely and are over the gluten effects. Rice milk is a decent sub. at least until you can figure out whats what. Just remember, you're not alone-- :)

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      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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