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tammykinz

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tammykinz Rookie

Hello, I am new here. this is my first post. I am a 35 year old mom of 2 and have suffered from GI problems for the past 7 years. My symptoms are acid reflux, headaches, bowel problems, sleep disturbance, fatigue, mental fogginess. My bowel problems are irregular like irritable bowel syndrome I often get spastic intestines causing me lots of pain diarrhea, incomplete evacuation sensations, cramping. Sometimes I have horrid attacks where I have incredible urges to go but can't and it makes me almost pass out due to the intense pressure and pain. A little more about me, I am quite a bit overweight and I have had a very poor diet....lots of processed foods, hardly any fruits and veggies, not enough water, eating out too much. I just generally haven't taken care of myself as I should. I have tried eating healthier, lost some weight and cut out alot of the eating out recently but still have really bad GI symptoms. I have been tested for celiac via blood test 2 times which both came back negative. I have tried a lactose elimination diet which has had no effect. I have had an abdominal and pelvic ultrasound which were negative for anything. gallbladder is fine. I have recently had a full abdominal and pelvic CT scan which have come back normal. Bloodwork up which were basic CBC and I think LYTES all came back normal. I have had my thyroid checked and it came back normal.

I have done alot of reading on celiac and gluten intolerance and thought I would try an elimination diet. I don't know if my symptoms sound like it or not to you guys though. I am on day 2 of the elimination and have been drinking lots of water. I went shopping yesterday and it is REALLY hard to find gluten free stuff and then when I do it is so expensive. I am drinking lots of water, eating fruits more but not overdoing it because my system isn't used to alot of fruits and veggies, but eating healthy and trying to follow the food guide as best I can - minus the gluten foods of course.

How long should I stay gluten free to know that it has made a difference or not ??


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Jestgar Rising Star

Give it a good six weeks. This gives you two weeks to figure it out, and four weeks really gluten-free.

I wouldn't recommend starting out buying gluten-free substitutes - stick with meats and veggies for a while.

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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      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.
    • AlwaysLearning
      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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