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New to this , need some info please

Feesa

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Feesa Apprentice
Feesa
Posted

Hello everyone or anyone,

I was just told a week ago that I am Celiac....Nice news  to find out because I thought I had been dying for about 8 months. Trips to the hospital with gas pain in chest and arms. Headaches and also major energy problems. How long should or could it take to start to feel better? I know It's going to take time however I have to take pills to keep me calm. I am finding that now when I eat that the gas is worse it now sits in my shoulders and back as well as my chest...Please tell me this has happened to other people...Any info would be amazing.

 

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Ennis-TX Grand Master
Ennis-TX
Posted

I hear you, I thought I was dying going crazy, and was running a bucketlist prior to dia. My issues were a mix of it effecting my brain, nervous system, guts, etc. My primary issues was the brain fog, confusion, brain damage, nerve damage, and bad gas and constipation lasting 8-10 days.

The worst of it will pass with the gas in 2-6 weeks, it can take 6 months and up to 2 years for significant damage to heal. The issues with the stress come from the inability to absorb certain nutrients. You will have to take a b-vitamin supplement  and probably a magnesium supplement to help with them. There are many others such as folate, iron, vitamin D, etc. I would read up on them and see if these are likely to be them. You can check the links below to see what I do to manage mine and my diet.

Welcome to the forums, this is great place to find out about many of the issues associated with this disease and get help. There is a huge learning curve to the diet and you will have to clean out your house, fridge, and change a lot of things out to go 100% gluten free without contamination issues. Things will get a tad worse before they get better, you might develop other food issues or find out you have some. But in the end you will prolong your life, and after some healing start to enjoy life more and more.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

Feesa Apprentice
Feesa
Posted
  • Author

Thank you so much for this info!! I have a place to start, Like most people I was told yes you are Celiac and then nothing..I get to see the Dr in July but have been running blind with this. I am happy to see this and know if I have questions I can ask, Someone may have ideas!!

 

cyclinglady Grand Master
cyclinglady
Posted

Welcome!  Glad you found us.  It is nice to have access to people who are in the same boat.  Ennis has provided you with some good links.  Questions?  Just ask!  

Healing?  Takes time.  Everyone is different.  

 

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  • Posts

    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

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      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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