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sdspain

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sdspain Newbie

I have had extreme edema in my lower extremities for 20 years. Diagnosed with hyperthyroidism and had a thyroidectomy. Tried fluid pills that only helped a little. All kinds of testing including closing saphenous veins. Nothing has been found and nothing really helps. I even tried acupuncture. My acupuncturist made a comment about gluten allergy. I got curious and cut gluten out for two weeks. In that time, my brain fog started to clear. I had more energy, my edema had diminished. My skin wasn't as itchy. I started researching how auto immune diseases were a factor in gluten intolerance/celiac disease. Every symptom was getting better. I accidently ate a gluten food and swelled like a balloon, and noticed issue of not being able to think of words and forgetting. If your unsure, do your own testing. Go off gluten until you notice improvements then slowly add in oats then rye, barley and wheat. If its just a wheat allergy then you'll know as soon as your body tells you. My symptoms took 24hrs to manifest from time of ingestion. Keep a log of foods you eat and check labels. Doctors can't make money off of you so many will dismiss what you say. My suggestion is to do what makes you better and healthier. Remember, everyone's symptoms and bodies differ.l


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Scott Adams Grand Master

For those not yet diagnosed with celiac disease it might be a better approach to first get a blood test for celiac disease, especially since you can now do this mail order for under $100. If you aren’t able to do this your elimination approach is not a bad alternative, but many people with gluten sensitivity don’t have obvious symptoms.

Awol cast iron stomach Experienced

Also joining the forum here was helpful to know how to correctly maintain gluten-free diet/lifestyle on all levels. As members here know the "landmines" many newbies need to know, even if they go self elimination diet route. 

In the past I read online  reviews for restaurant s how many Celiac's go to local restaurants with gluten-free selection  etc. It can be misleading. I found the forum here saying only entirely gluten-free restaurants are safe. I found this to be true. 

The restaurant, shared manufacturing lines, variations in  labeling,  and personal care products are the  biggest risk landmine risks for those going gluten-free.

Also sticking to a whole foods diet during healing were all helpful tips that the celiac.com members warned newbies about which other articles or websites can muddy the water on these topics which can be risky for those who need to be on a medical gluten-free diet.

 

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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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