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Not Getting Better Please Help

jamesM11

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jamesM11 Newbie
jamesM11
Posted

i have been eating gluten free for 9 months now and i am very strict , i have not got better and i am literately going insane , i dont mean to sound like im whinning but i cant take it anymore. i have pain in my stomach everyday. has anyone else experienced this

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome James. Some of us have other intolerances. For me stomach pain is linked to soy and is releived with Pepto Bismal liquid. Might not be the case for you though.

Have you spoken with the doctor who diagnosed you about your continued problems? There may be other things in addition to celiac that need to be ruled out. Are you taking all the precautions we need to take with our food? We have to be very careful about cross contamination and make sure we are not doing things like sharing toasters, butters, condiments etc with gluten eaters. We need to replace strainers, wooden utensils, toaster and need to be very careful to make sure that if we eat out we are eating from a gluten free menu at a place that knows to take all the precautions we need to take.

dilettantesteph Collaborator
dilettantesteph
Posted

What do you mean by very strict? Are you eating a lot of processed foods? You could try a produce and unprocessed meat only diet. Are you still eating dairy? You may have lactose intolerance, many do especially at the beginning.

I didn't get better eating gluten free initially either. I tried eating only processed foods made in dedicated facilities and that helped quite a bit. I did better still when I eliminated all of that and went to produce and meat only. I was able to add back dairy. Now I need to be even more careful than that about cc. I am a super sensitive celiac, sensitive to very low levels of gluten.

I keep careful track of what I eat and what symptoms I get with a food/symptom journal. That way I have found foods which I can eat which don't give me any symptoms.

Have you been to the doctor? There are other conditions which you could have and your doctor could advise you about that.

cavernio Enthusiast
cavernio
Posted

Dairy is definitely a thing to stop if you haven't already, seeing as you have pain in your stomach and that's a standard symptom of lactose intolerance. If that doesn't remedy it within a week or so, I would go to a doctor. There's a lot more than just celiac that causes stomach pain.

nvsmom Community Regular
nvsmom
Posted

If you are certain that you've eliminated cc, you could look to other causes for your pain. Crohns, colitis, and hashimoto's can cause stomach issues, as can more rare AI disorders. It could be something to check into.

Best wishes. :( I hope you feel better soon.

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      Severe severe mouth pain

      By trents · Posted

      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
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      By Charlie1946 · Posted

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      By Charlie1946 · Posted

      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
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