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14 years after diagnosis I’m cheating


Gluten-Hater

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Gluten-Hater Apprentice
5 minutes ago, Wheatwacked said:

"In case you were wondering, it doesn’t matter if you’re getting D2 or D3, and the sunlight-generated kind isn’t better than the nutritional variety. “The body can use each perfectly fine,” says Dr. Insogna. " https://www.yalemedicine.org/news/vitamin-d-myths-debunked

After 2 years of 250 mcg (10,000 IU) a day of vitamin D3 my blood level was  48 ng/ml. After 6 years it is (checked last month) 87 ng/ml. Even if you only do it for one or two bottles you will notice an improvement in your feelings of burn out very quickly. While sunlight is nice, and going outside has other advantages, once you get into the fall until the spring in the northern tier, you are using up your reserves. With that I have osteopenia. My dad broke his femur neck in a slip and mom cracked her forarm in a trip. I wonder if the higher incidence of osteopenia/osteoporosis in Celiac might just be that we are tested more. My T score in femur neck = -2.4.  In addition to D and Calcium for your osteoporosis, you need vitamin K, manganese, phosphorus, etc. Here is a good article: 11 Supplements That May Help Manage or Prevent Osteoporosis (healthline.com)   https://www.healthline.com/nutrition/osteoporosis-supplements

AA did not help me because I am superanxious about speaking. One week after starting GFD in 2014 my addiction was broken. Same thing, the stomach pain no longer was worth it. For years I would take a sip, throw up, then drink a half pint of vodka.

Still smoking after 50+ years, so congratulations to you. At one point I was on the patch, chewing the gum and still went outside for a cigarette after doing hypnosis. One day soon. When I started they were $0.35 a pack!

Pipingrock.com has the best prices for vitamins that I have found. "High Potency Vitamin D3, 10,000 IU, 100 Quick Release Softgel $4.99"

I love that name { wheatwack} hilarious. I’m still young 42 but have the early osteoporosis in first tests at age 30. Anyway thanks for all that info. Skin cancer runs in my family so I just let my legs get some sun. I’ll have to purchase those Vitamens come October. Thanks for the humor. Lol. I’m dying for a cigarette but I swore this time is the time I’d quit plus only been smoking past 3 yrs straight before than none for 18 yrs. drinking I’m done for no stomach lining makes everything unbearable to drink. During my biopsy my Doctor said I had lost my 

On 8/25/2021 at 9:45 PM, Scott Adams said:

I would urge you to try to quit gluten again. Have you tried this new pizza? Yes, it contains "gluten-free" wheat starch, and the last few batches I've tested were gluten-free, but it tastes like the real thing...so binge on it instead of gluten:

 If you want to change your screen name send me a personal message with three choices.

How about { GLUTENHATER}?

On 8/25/2021 at 9:45 PM, Scott Adams said:

I would urge you to try to quit gluten again. Have you tried this new pizza? Yes, it contains "gluten-free" wheat starch, and the last few batches I've tested were gluten-free, but it tastes like the real thing...so binge on it instead of gluten:

 If you want to change your screen name send me a personal message with three choices.

How about { GLUTENHATER}?


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trents Grand Master
15 minutes ago, Glutenlover said:

Yes I meant that being descended from that organization the Mennonites that I’m allowed to give my opinion, after thorough research into that community I have myself deemed it as a whole a horrific cult. At least with the Amish whom not I live nearby, they allow all teens the chance to leave and decide if they want to stay after a certain period of time. With all or most mennonites they force them to stay are overly strict act like the taliban towards women and the outiside world. I’m a former defense contractor and I compare Mennonites to the Taliban minus the guns so that’s strictly my opinion I’m sharing. My job as a defense contractor made many famous friends and enemies and earned the respect of the pentagon. I have issues with a lot of things and know of many cults throughout this world from my experiences but let’s just stick to Celiac disease. If you are Mennonite I’m sorry if my opinion offends you sincerely 

No, my Christian heritage is not Mennonite. My wife's is, however. It just strikes me as wise not to say unnecessary things that have the potential to offend someone.

DebJ14 Enthusiast
On 8/25/2021 at 6:33 PM, trents said:

So how did you feel physically after your binge? Was it worth it?

If I were to eat a piece of wheat crust pizza or a wheat made blueberry muffin, within two or three hours I would be writhing on the bathroom floor with intractable vomiting and unbearably painful gut cramping followed by several hours of diarrhea. When I was diagnosed about 20 years ago my symptoms were relatively minor. I could eat that pizza or that muffin and my gastric distress would be very minor. Not so now. Are you a silent celiac still? Even after being off gluten all those years?

 I never cheat because within 30 minutes I have projectile vomiting and explosive diarrhea that lasts for hours.  Then, I feel awful for days afterward.  When I was diagnosed in 2007 my biggest issues were migraines, rashes, joint pain, ataxia, and severe constipation.  The longer I have been off gluten, dairy and yeast, the worse the reaction if exposed to any of them.

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    • Waterdance
      Thank you so much for your informative reply. My GI doctor ruled out gluten celiac entirely because I didn't have skin rash. I had a histamine response to wheat and milk by scratch test by an allergist. I'm not always symptomatic but the older I get the worse it gets. I've found through trial and error that I can react to all grains. Buckwheat and corn included. I tolerate some rice but I wouldn't want to eat it every day. Potato is pretty good for me but I can't eat it every day either. I compromise with squash. I tolerate it well. The Best I feel is while fasting. When I'm in pain and discomfort it's easy to fast even long term, it helps. The problem I'm having is I'm great with my diet for 3-6 months then I start to cheat again. When I don't get immediate symptoms I get this foolish false security. I react then go back to my diet. Rinse and repeat. I suppose discipline is my real issue. I'm very tired of perusing a diagnosis. The constant gaslighting and dismissal is exhausting. Thanks for your suggestion of the autoimmune protocol. I will give it a try. Perhaps the guidelines will help me to navigate better.   Thanks again.
    • Scott Adams
      This isn't the first potential celiac disease treatment in the pipeline that failed. There have been others...
    • Kwinkle
    • trents
      First of all, being able to return to foods that you have developed a sensitivity to in connection with celiac disease is not a given. You may or may not be able to do this with time. But the ability to do so seems to be connected with the healing of the villous lining of the small bowel which often takes 2-3 years in adults after attaining to consistently truly gluten free diet. But you will just have to test the waters. Experimentation with those foods is the only way. Realize also there are thresholds of tolerance. You may be able to consume those foods without issue but not as often and in lesser amounts than in your pre celiac days. So, start small and go slow.
    • trents
      Welcome to the forum, @Waterdance! Constipation and diarrhea are classic celiac symptoms and hemorrhoids is usually the outworking of either or both of those two problems. But I'm curious about your statement, "I probably don't fit the diagnostic criteria for a diagnosis of Celiac Disease." Perhaps your understanding of what that encompasses is outdated and deficient, as is also true of many physicians. Actually, now there are over 200 symptoms and medical conditions that have come to be associated with celiac disease and the list keeps growing.  And you use the term "gluten intolerance". What does that mean to you? Actually, gluten intolerance is a catch all term referring to two different gluten disorders: celiac disease and NCGS (Non Celiac Gluten Sensitivity). Celiac Disease is an autoimmune disorder characterized by ingested gluten triggering the immune system to attack the lining of the small bowel. NCGA or just, gluten sensitivity, for short, is a reaction to gluten that is not autoimmune in nature (neither is it an allergic reaction per se) but it's symptoms overlap with that of celiac disease. We actually don't know a lot about NCGS yet but some experts believe it can be a precursor to celiac disease and it is 10x more common that celiac disease.  There are some blood antibody tests that are pretty specific to celiac disease but they require that you have been eating normal amounts of gluten for weeks/months prior the blood draw. Having the blood draw done while being gluten free or even having been on a reduced gluten diet will invalidate the testing. There was a recent article posted in this forum about testing being developed that did not require breaking a gluten fast but it is not available yet. When and if it is, that will be a giant breakthrough because so many people experiment with the gluten free diet before they ever get tested and can't safely utilize the "gluten challenge" because their reactions are too severe. So, they can't distinguish whether they have NCGS or celiac disease and must live with the ambiquity.  There are also some people who react negatively to all cereal grains. You may be one of them. Technically speaking, gluten is found only in wheat, barley rye, and some cultivars of oats. But all cereal grains contain proteins that more or less are similar to gluten and, apparently, similar enough to cause a gluten-like reaction in some people.  Have you experimented with non-cereal alternative grains like buck wheat or sorghum? Can you substitute potatoes for grains to get calories? Have you looked into SIBO (Small Intestine Bacterial Overgrowth)/histamine intolerance? This could also explain the problems you are having. You are not going to want to hear this because you will feel like you are starving but the Auto Immune Protocol Diet will probably make you feel a lot better.  
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