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When You First Start To Eliminate Gluten Containing Foods
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As you can imagine, I have many questions. I have not yet received the blood work results, and am having this Wed. the endoscopy biopsy, along with colonoscopy.  I have had digestive issues about 2 years now, and only recently the light bulb went on with both me and the doctor.  Regardless of the results, I am going to eliminate gluten.

 

The obvious food culprits are easy to remove.  Then I read gluten hides in many foods and vigilance is needed.  Here is the crux of this question - so you stop eating the obvious offenders, those which you have likely been eating in volumes - breads, pastas, cereals and the like.  Just by removing those, doesn't a person begin to feel better?   Knowing you have to be careful of the hidden gluten is an accompany step....but to read that a leftover crumb from a toaster can make you sick, or continue to keep you sick - that boggles my mind.

 

I fully anticipated I would begin to feel better and have symptoms leave me, eventually, when I am able to start eliminating the gluten, but if I do get a celiac diagnosis, it seems the odds are stacked against~!

 

Did "you" feel better after the initial elimination of the obvious culprits?  Thanks. 

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I did not have any symptoms at all except for anemia.  I just went for a routine colonoscopy (over 50) and the GI suggested Celiac.  I was shocked.  Took the blood test and it was mildly positive.  I knew that I had it, so I ate gluten like a fiend for the next seven weeks.  I literally and quite stupidly consumed a loaf of sourdough bread, pastries, cakes and cookies (I loved to bake) a day!  By the time I had the endo and the colonscopy, I had intestinal symptoms which did not go away noticeably for seven weeks (Marsh Stage IIIB).  Then I had to deal with the anemia, thyroid storms and menopause.  Three months later, my first fracture (vertebrae) resulting from osteoporosis.  

 

Now, I am better a year later, but just a crumb will set me back a week!  The good news is that I'm feeling great, strong and am back on my bike!  So, it's worth it to remove gluten -- every single trace!!!!!  Cold turkey is the ONLY way to go…..

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Yes, one crumb from the toaster WILL make you sick. In the coping section you will find a thread called "Newbie 101". It'll teach you how to avoid cross-contamination. It takes a bit of learning and can seem overwhelming at first but after a while it becomes second nature.

 

First of all, fresh meats, fruits and vegetables are all naturally gluten-free. You would be better of sticking to these things at first. There are a lot of gluten-free substitutes such as breads (I like Canyon Bakehouse or Udi's), frozen pizzas (Against the Grain is my favorite), plenty of gluten-free flours and baking mixes, cookies, cakes, muffins, just about anything you can imagine. The trouble is, most of these are high calorie/low nutrition, so it's best to limit them to occasional treats. (Although I was pleasantly surprised to find that King Arthur gluten-free flour, although expensive, has quite a bit of nutrition so my pancakes are GOOD for me. :) )

 

Then there are regular foods at the grocery store. Some companies are really good about labeling. By law, wheat has to be labeled, but barley doesn't. However Kraft Foods, Con Agra, and several others WILL label for barley. (Rye you don't have to worry about much. I think rye bread is about the only place you will find it.)

 

Nuts? Yeah, some are processed in the same facilities or on the same equipment as wheat products, but if you stick to Planter's (a Kraft company), just read the label and you'll know if they are safe or not.

 

You have to check all of your medications and supplements too. Sometimes we have to write to the companies that make them.

 

But all in all, it really isn't that hard. You can do it! And you will feel SO much better. :)

 

If you have any questions about anything you can come here and we'll be glad to help.

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It is a difficult concept at first...hence the large learning curve when diagnosed.  For me and many others...the reactions became more severe rather quickly....it's like your body is so used to fighting this invader and then it is gone so when small amounts are consumed there is a massive attack on smaller and smaller invaders.

 

Try not to spend too much time questioning it...simply prepare to remove all sources of gluten and learn to read every label, every time.  Starting with a diet of whole foods is better for your healing system and much easier to navigate than reading a ton of lengthy ingredient lists on processed foods.

 

Good luck tomorrow :)

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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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