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Other Issues - Where To Start?
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For whatever it's worth, I react more violently to soy than gluten. You may want to try eliminating soy. It's tough because soy is in everything including cosmetics but it made a huge difference for me. Also have you eliminated all dairy or only lactose. It could be a casein problem. I got testing through enterolab.com and it helped with the guess work.

I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer.

My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises!

At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.

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I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer.

My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises!

At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.

Glad to hear some of the symptoms are easing for you and good luck with the appointment.

Enterolab does testing for gluten, soy, casein, chicken egg and yeast as well as genetic testing. You can order the test yourself without a script and you pay for the tests directly and some insurances will reimburse for the testing. I found it very helpful but still feel like I have additional intolerances which I need to narrow down.

I hear you on soy in vitamins. I have thrown out a bunch myself as well as ALL lipsticks and lip balms. Freeda vitamins are all gluten, soy and casein free and pricing is reasonable.

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Glad to hear some of the symptoms are easing for you and good luck with the appointment.

Enterolab does testing for gluten, soy, casein, chicken egg and yeast as well as genetic testing. You can order the test yourself without a script and you pay for the tests directly and some insurances will reimburse for the testing. I found it very helpful but still feel like I have additional intolerances which I need to narrow down.

I hear you on soy in vitamins. I have thrown out a bunch myself as well as ALL lipsticks and lip balms. Freeda vitamins are all gluten, soy and casein free and pricing is reasonable.

Thank you irisheyes13. I never answered your question about casein...I did eliminate it totally. A couple days after I totally stopped eating it, my sinuses cleared up completely.

On a good note, had a 2 week check up with the gastro yesterday and my catscan showed NO diverticulitus - yay I'm cleared to eat nuts, seeds and popcorn again! Wooohooo!!!

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Good for you Joni! It's always fun to be able to add a variety back into our diet and more importantly that you no longer show signs of diverticulitis.

I am a big fan of Enterolab testing since I finally got some answers recently after YEARS of suffering with no answers from multiple GI physicians. None ever suggested going gluten free or anything free for that matter after my endoscopy came back negative; as a matter of fact they told me to feel free to eat all the gluten I wanted after I went gluten free for 1 month. I want to also mention that I am in no way affiliated with or have any vested interest in the lab. I named the lab testing in two posts and I have been flagged as a potential spammer but I am just enthusiastic about finally feeling better.

Let me know what you think about the lamb. I have never tried it as well. I remember my grandmother cooking leg of lamb when I was a kid and hated the smell but maybe it's time to give it a try.

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Yes, thank you -it is a relief. Let me tell you though...he wanted to do a colonoscopy, but was refusing to do an endoscope. I figured if I was going to get one test and prep for it, I might as well have both done. He said there was no need since I know I have celiac disease and am gluten free. Funny all my symptoms were on the left side just below the rib cage...sounds like endoscope territory to me. I'm not going back there again...2 local GI's down. One day I will find a good one...or at least one that will listen. My family doctor is pretty good about listening and testing me for the tests I really believe I should have. And I have a great Nurse Practitioner I see for vitamins and nutritional advice.

I'm glad you found Enterolab and their tests. Many people on this forum have used them when doctors refused to test them or they were seeking answers. I totally understand your enthusiasm about them. Finding answers and feeling better means so much!

How long have you been gluten free? How long did it take you to find out you needed to be gluten free?

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EnteroLab stool test for gluten, yeast, egg, dairy and soy. $99 per food. This test is the most reliable.

Then for the other foods, I suggest www.NowLEAP.com for $500. They will test over 250 foods. This test caught over 80% of my other sensitivities and their tips of starting a food diary and doing an elimination diet has helped me catch the remaining foods.

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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