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Newly Diagnosed


kristie51270

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kristie51270 Newbie

Hi,

I was recently diagnosed through blood work with Celiacs. My IGA level was a 75, I was told normal range is 1-19. The nurse that called told me to immediate go Gluten free until I go to the GI doctor which I go to in two days. I have been gluten free for two weeks now. My symptoms are definitely improved(stomach pain, bloating, diarrhea). I have to admit though that I am having a hard time with the diet. I have read alot on the internet since being diagnosed and what I read over and over is that the processed and packaged gluten free foods will put alot of weight on people with Celiacs. I have always been right around 129 lbs..I am 5'5".About a year and a half ago for no apparent reason, I put on 12 pounds. I have always worked out at least 3 days a week and kind of watched what I ate. Since the weight gain I have upped my exercise drastically, added weights, done the Weight Watchers points system(which always worked in the past to take weight off) and absolutely nothing has worked. I have taken off about 3 lbs since going gluten free, probably water weight, but I am very afraid that I will start putting on more. I know that 12 lbs probably doesn't sound like alot but for me it is since I have always been very good at managing my weight and this weight seems to be stuck on me and the thought of putting more on while managing this disease is scary. I definitely am going to continue to follow the diet because I am starting to feel better. One thing I have noticed that has not gotten better since going gluten free but actually is worse is the tiredness. I am not a napper and for the past few weeks sleeping is all I think about. Can anyone give me any advice or feedback on the diet, weight gain/loss, tiredness,what to expect? Thank you!


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ravenwoodglass Mentor

Not everyone gains weight on the diet and usually those that do are folks that were underweight to begine with. I lost weight in the first month, about 20 lbs and was afraid it would just keep dropping but it leveled out after that month and I have stayed steady.

As to the tiredness you may be going throught withdrawl, quite a few of us do, and if you are it should lift fairly soon as long as you are careful with the diet.

Do take it easy with specialty gluten free foods and go with whole unprocessed foods as much as you can at first. It will help you heal fastest and keep down the risk of cross contamination.

Welcome to the board, ask any questions you need to, read as much as you can and I hope your feeling much better soon.

sb2178 Enthusiast

Yes, ditto the time will heal comment. And patience!

You may want to check with the GI to make sure they don't want you to still be on a gluten containing diet for a biopsy (if you were willing to consider one).

A few concrete examples of whole foods to explore:

grains- kasha, millet, wild rice, brown rice

beans (as digestion will tolerate) - lentils, black, pinto, kidney, etc

vegetables - everything you like! cooked is generally easier at first and starchy veg are easy to use to replace former carb sources like bread

fruits - ditto the veg

nuts & seeds - sunflower, almond, flaxseeds, sesame, etc

dairy (again, as you can tolerate) - yogurt, hard cheeses, etc

As long as you don't go too crazy with the fake Oreos, you'll be fine! Small doses of Oreos and Betty Crocker mix cupcakes may be helpful during the grieving period ;-)

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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