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shannonmc

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shannonmc Newbie

Hi Everyone! I new and over the next few weeks/months I'm going to have lots of questions--here's the story (familiar to many of you , I'm sure).

Family history of Crohn's, IBS, thyroid disease, reactive arthritis (Reiter's Syndrome), Premature Ovarian Failure, and Lupus.

I have hashimoto's and premature ovarian failure and my endcronologist asked 1.5 years ago about my bowels. When I told her about my mysterious and painful diarrhea with alternating constipation, she asked about a family history of wheat/gluten intolerance (yes). Then asked if I was irish (yes). She ordered ITG, TTG, and EMA blood work and viola, I was TTG and EMA positive.

Okay, so then I freaked out and refused the biopsy. My husband is italian and eating pasta and bread was/is really important to him plus I have three young children and I wasn't willing to change. (My husband is really nice and kept on encouraging me to get the biopsy and was convinced I was gluten intolerant LONG, LONG before I was.) So to make a long story short, and after having the biopsy canceled twice (once by me, once by the doctor) I decided to go gluten free. Familiar story--after only two weeks I felt FANTASTIC, and I mean absolutely fantastic.

My backaches are gone, my mysterious diarrhea is gone, no more pain, no more gas. I'm sleeping so wonderfully after 6 years of only 6-7 hours of sleep.

Okay, so I know I should have had the biopsy first, but now that I'm reading this forum there is this other test, right? Here's the clincher for me--my endocronologist called and said she was going to lower my meds--I don't need as much because I'm absorbing them so much better. Cool.

So here's my questions--cross contamination in my kitchen. The issues here are significant--does anyone live with non celiacs and have tips? (I don't have a toaster, so that is not an issue) What about washing and sponges--they eat pasta, I wash the dish, is the sponge now contaminated? I can't seem to get my mind around this--what good would it do to have a separate sponge if I'm washing dishes that had wheat in them? Can I still bake for the kids or would it be better to do it with a gas mask on? (Just kidding about the gas mask). I will have more questions later but thought I would start here.

Thanks in advance and I'm so glad this forum exists--you posts have been so helpful over the last few months.

-Shannon

P.S. I posted this a few minutes ago and realized that I probably posted in the wrong forum, my apologies, maybe just the question about entrolab (sp?) is approp and skip rest and I'll post the rest in the other forum. Thanks for your patience as I figure this out.


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Jodi Mills Apprentice

Hello,

I am new to the whole gluten free diet, but was diagnosed with celiac at around age 6. however i didnt stick to the diet. Now as I am retraining myself i have asked some of the same questions as you, and was told the best thing to do is to have new sponges, in your case it might be easier to label which one is for your "gluten free" dishes, that is what I have had to do in my household, my boyfriend is a gluten eater. I have my own special pot, and a special pan, that only I can use. i too do not use a toaster, although he does. spatulas, anything plasticky, should be replaced......

hope that helps!

this site is amazing, I feel great being able to pass on information that was passed on to me!

Guest Jemenii36

hi shannon-

I completley understand your fears and I am also concerned with cross contamination, as well. However, having been diagnosed with celiac disease almost a year ago i have been doing a lot of research. It really seems that although many people are not allergic to wheat/gluten, it has been show that is a an extremely healthy diet to follow. How about trying to make dishes gluten free without telling your family, and see what they say (if they notice). The more recipes i would like to try but can't, due to wheat/gluten in the recipe, the more i am able to find substitutions....and let me tell you, they mostly come out great! It takes a lot of trial and error but if you enjoy cooking and baking i guarentee no one will even know what you are making is gluten free! let me know if you need any suggestions or help with anything, as i am continuing to find recipes that i can alter!

-Samantha

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    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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