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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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    • Hmart
      Is this celiac?

      By Hmart · Posted

      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      Fiber Supplement

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      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

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    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
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