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I Feel Way Better And Do Not Want To Get Sick Again For A Blood Test
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Hi Everyone,

The last couple of weeks have been a huge change for me except for two days where I didn't feel well. The only thing I miss is pizza and I don't like the gluten free pizza that much.

Since my last visit to the gastro, I have been eating all gluten free. I eat yogurt and fresh fruit for breakfast, either a salad with balsamic vinegar and olive oil or a tuna sandwich on gluten free bread for lunch, gluten free rice cakes or veggie dip with gluten free crackers for snacks and I cut out all the beer and drink Angry Orchard hard cider for a cocktail when home from work. For dinner it's plain meat, chicken, fish or pork, fresh veggie and either gluten free pasta or a sweet potatoe. I feel awesome!

I called the gastro to let her know and she told me I need to eat gluten again to do the bloodwork and have an endoscopy. Problem is - I really don't want to get sick. It's horrible! Like all of you - the stomach pains, pressure, brain fog, constipation/diareah, bloating, rashes, headaches - is it worth it? If I know I feel better then why torture myself?

I am noticing that one food is bothering me and I thought it was supposed to be gluten free - it's those Nature Valley Protein chewy bars - the ones that are peanut, almond and dark chocolate. My store lists them as gluten free and the day I ate one after lunch, I bloated up by evening time. Has anyone else had trouble with this product? Also I ate 2 small spoonsfuls of peanut butter - natural peanut butter that my store also had listed as gluten free. Could I be having a problem with nuts? Is this common with celiac or gluten intolerance?

Also I lost a bunch of weight this last year - how soon will it take to gain back, if my body responds well to a gluten free diet? I don't exercise much anymore and I have a desk job at work. Afraid to exercise because I don't want to burn the calories and lose any more weight?

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I've heard that those bars are not gluten free. Be it from cross contamination (shared lines) or an actual ingredient. Did they have oats in them as well? Because unless they're certified gluten free, then they're CC'd.

As for the peanut butter, i'ma massive fan of it. Never had a problem with it here.

I'm thinking you had the issue with the bars.

Nevermind found these http://www.natureval...atePeanutAlmond They have barely malt in them, as well as a wheat warning label. :(

Edited by shadowicewolf
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I called the gastro to let her know and she told me I need to eat gluten again to do the bloodwork and have an endoscopy. Problem is - I really don't want to get sick. It's horrible! Like all of you - the stomach pains, pressure, brain fog, constipation/diareah, bloating, rashes, headaches - is it worth it? If I know I feel better then why torture myself?

You do not have to do anything with regards to a formal diagnosis if you feel better and can stick to the diet based on what you have done already. If you do not wish to eat gluten again, tell your doc you have nixed that idea. I wouldn't eat gluten again either...not for anything!

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I was the same way with not wanting to feel awful again. My Dr. completely agreed. He saw my liver enzymes go from the mid 200's to 27 in 11 days of gluten free eating. He said that was enough for him to believe it was celiac (after first saying he didn't think it was, before the blood tests came back :) ) Anyway, in the last two months I've had severe bronchitis, pleurisy, and a serious concussion. He said he did not want my body to go thru anymore trauma when the blood tests were so profound. I am just fine with that!!

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That is another thing....my liver enzymes were up and I couldn't figure out why. Today still feel a bit yucky...stomach rumbling bad, very gassy. I was OK yesterday until last night when I had split pea soup.... Major gas. Woke up better this morning and had a yogurt and orange juice with protein shake mix in it.....no wheat but then the rumblings came back with a vengeance along with the gas. Been on the couch with a heating pad and eating Tums. Not sure what did it this time. :(

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Perhaps (if your doctor allows it) go ahead with blood tests anyway so you can have a baseline, especially if you have problems in the future? If you have only been gluten-free a couple of weeks, I believe assume results (of bloodwork as well as of endoscopy) could still be meaningful anyway. Everyone heals at a different rate, but neither intestinal damage nor antibodies get better instantly (I'm sad to say).

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Unfortunately she said no to the blood work and endo until I gluten up for at least a month. Today has been good.....don't want to go back to pain.

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i know the peanut butter granola bars my husband purchases give me major stomach bloating. i can't tolerate them at all. i didn't want to eat gluten again either after i started to feel better for my bloodtest, but i got the tests done anyway. everything came back normal. i'm just sticking with what makes me feel well.

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Was doing some reading on the Pale diet. Problem is, I need to gain weight back....not lose it. But I can see the point of laying off processed foods most of the day and indulging in some gluten free goodies for snacks. Felt good today....had 2 eggs over with gluten free toast, coffee and orange juice. Lunch was a yoplait strawberry/banana yogurt, snack ed on some gluten free Snyder corn chips with some gluten free Tostitos spinach dip. Had an Angry Orchard hard cider (I still am crying over not having my 1 beer....didn't like the gluten free ones after being used to dark rich micro brews). Dinner was steak seasoned with cracked black pepper and sea salt, a buttered sweet potato and baked zuchinni squash. Desert was 2 gluten free rice cakes...caramel flavor. I think I did good.....need to gain weight, whereas before all I ate was pasta and junk food and felt ill all the time. Diet is not that hard to follow but I miss beer, pizza and toll house cookies. I have to research some recipes for pizza and cookies:)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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