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Looking For A Support Group
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4 posts in this topic

Hello,

I have not been officially diagnosed with Celiac. However, my blood tests always come back not statistically significant. In addition, I have a family member who has been diagnosed. I have two family friends who are nurses and I have about 90 percent of the symtoms. I have decided to be proactive and give the gluten free diet a try. I am lost as where to start. If anyone has any ideas of what for me to look for in purchasing food or where to go I would be happy for the suggestions. Thanks so much for your help.

JAS

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The easiest way to go gluten free is to eat natural foods; e.g., meats, vegetables, fruits, nuts, rice, eggs, etc. If you feel you MUST have gluten-free bread, the best brands (IMHO) are Against the grain, Udi's, and Rudi's--and all of these can be found in the freezer section of an upscale or health market. The best gluten-free pastas are Tinkiyada and Glutino....and if you'd like to buy "regular" food that is gluten free, here is a link:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Hope this helps!

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To really give this a good test, I'll give you the advise my gastro gave me......go off glutens and dairy for two months. Gluten and dairy intolerance many times walk hand in hand because of the damage it does to the villa in the intestines. Once damaged you have to repair your system in order to tolerate dairy again.

Read labels, go whole foods, natural, don't cheat. No fast foods, no frozen dinners, no boxed mixes, no marinades, check your canned foods and candy. Two months of this and you will have an answer. If you decide to give up both for a month, introduce only one at first to see if you have any effects.....you should know by the next day. Then go off both to clear your system again and then try the other. Dairy is actually the #1 food intolerance and gluten #2 according to my gastro.

I wish you the best of luck!

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Hello,

I have not been officially diagnosed with Celiac. However, my blood tests always come back not statistically significant. In addition, I have a family member who has been diagnosed. I have two family friends who are nurses and I have about 90 percent of the symtoms. I have decided to be proactive and give the gluten free diet a try. I am lost as where to start. If anyone has any ideas of what for me to look for in purchasing food or where to go I would be happy for the suggestions. Thanks so much for your help.

JAS

Welcome, JAS! I don't know if there is a support group in Frederick but I have heard there is one in Gettysburg, PA, which isn't far from you (don't know how active they are). You might want to call MOM's in Frederick (they're on Buckeystown Pike). I know my doctor's wife shops there and they would probably be knowledgeable as to support groups in the area.

I agree with others that a whole foods diet is the way to go when you first go a gluten-free and to stay away from a lot of processed foods in your diet.

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    • I_would_widen_the_search_to_your_whole_environment.....Carefully_consider_what_else_was_different_when_you_felt_better.
    • Thanks a lot for your advice and the link. I will surely check upon GCED. But, doesn't a negative HTTG (can't do IgA ttg as IgA deficiency) result mean that I am not exposed to gluten ? 
    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
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