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Aetheana

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Aetheana Newbie
Aetheana
Posted

Hi everyone.

I haven't been officially diagnosed yet, but I'm going to my doctor next week to get the results of some bloodwork. Ive decided that even if the diagnosis of celiacs isnt made then, I'm still going gluten free. Why you ask?

Im hypothyroid and fibromyalgia. Im overweight and nothing i do will take the weight off. im only 24. i dont have a ton of problems in the GI area. some loose watery stools, some constipation. apparently i potty trained myself when i was growing up because i always had D. i wonder if i've been celiac my whole life... any thoughts on that?

my mom is a mess with hypoT, rheumatoid arthritis, lupus, etc... general autoimmune disorders and I follow closely in her genetic footsteps. she wont get tested for celiac disease, but im trying.

heres what i have summarized thus far, correct me if im wrong about anything, im still trying to digest everything:

brain fog/fatigue: should go away relatively shortly after going gluten free, twoish-sixish months

aches: same as above

anemia: i have two doctors, one i shall refer to as the stupid doc. she says that im not anemic at all, even though the last time i tried to give blood they turned me away and i was very anemic a few years ago to the point of taking hardcore supplements. i eat iron containing food and everything, but stupid doc says im fine. i think she's wrong. Good doc that im seeing next week did an iron test as well, so we'll see on that. but if i am anemic and celiac disease the anemia should also go away soon. twoish-sixish months.

lactose: i should probably cut out a lot of dairy containing foods for the first couple months to help with getting rid of the brain fog, fatigue side of things

weight: should start to come off, if i dont over do it on sugar. i looked into the SCD and its SO restrictive i cant handle it right now while im just starting to get used to gluten-free diet. might go into it later if my weight wont come down.

be careful: watch for cross contamination and hidden gluten. food starch if in the US is ok. modified food starch if in the US is ok.

fibromyalgia: common in celiac disease people... might go away if follow gluten-free? dont get rid of muscle relaxant yet? not sure about this one. im skeptical on the diagnosis of fibro. my stupid doc diagnosed it and i think she just wanted me out of her hair. i kept bugging her about a diagnosis for hypoT which she wouldnt do until my TSH was up up up. good doc did diagnose hypoT... im just skeptical, but i am in real, chronic back pain.

sleep: most people with celiac disease dont sleep well. i dont get up in the middle of the night to use the restroom, but ive been having a rough time getting enough sleep in. when i do sleep its sort of restless. and i find i need a lot of sleep to feel rested. this went away directly after i started thyroid meds and vitamins, but its come back again. higher does of thyroid meds, maybe, maybe just a symptom of celiac disease?? thoughts?

Sorry this is so long... if i have some other confusions I'll post again. I really enjoy reading everyones wisdom! Thanks in advance! :D

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Aetheana Newbie
Aetheana
Posted
  • Author

Do I have it all right, is that why noone is adding anything?

Was it too long? Am I too impatient?

Probably a bit of all of the above. :lol:

Guest nini
Guest nini
Posted

welcome... sounds like you got it about right...

I'd post more but my brain hurts today... a lot of people read this board at different times and may have A LOT of posts to get through before they even get to yours... be patient, you will get some feedback!

penguin Community Regular
penguin
Posted

I'm new at this, too, but it sounds like you have gleaned pretty much what I have.

The dairy thing depends on how damaged your villi are. I don't know if I'm intolerant or not, doesn't seem to bother me much, and either way, one crisis at a time. :blink:

I'm right there with you on the SCD diet, I know people rave about it, but it seems way too raw vegan/caveman diet in it's philosophy. I don't trust it. That and I like my processed foods, thank you very much.

Eating out is risky, but so is eating in your kitchen if it has wheat stuff in it :rolleyes:

jerseyangel Proficient
jerseyangel
Posted

Looks like you did your Celiac homework! Just be aware that we all heal at different rates and often symptoms go away initally, but come back. There are ups and downs, and sometimes other intolerances crop up that make it even more confusing. This is not meant to depress you or anything, but I wish I had been informed of these things when I was first diagnosed--my doc pretty much told me 'gluten-free/dairy free diet, see you in 6 months'. I didn't find this forum until a few months after my diagnosis, and was relieved that others were having the same issues with healing that I was. All of that said, I'm way better than I was this time last year, and it is so worth sticking to the diet. Also, make sure that your personal care products and medications are gluten-free. There is a wealth of information to be had here :)

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      My only proof

      By NanceK · Posted

      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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