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Trying gluten free diet

HARRYE10

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HARRYE10 Rookie
HARRYE10
Posted

I have been tested for coeliac (ttg blood test) and twice it has come back negative and so my GI has said that I don't have coeliac disease and have IBS. However I am still suspicious as my grandmother was a coeliac and I am exhibiting many of the symptoms and so I'm not sure why the GI was so quick to dismiss it. As the doctors and specialist are no help I am trying a gluten free diet. I have been off gluten since Wednesday night but I still haven't been feeling right. The bloating I was having seems to have stopped but I am still having abnormal stools and some stomach cramps. I have also been having some bad tension headaches and light-headedness since then and I was wondering - is this a type of withdrawal symptom? Has anyone else had this? Thanks.

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Gluten-free-01 Enthusiast
Gluten-free-01
Posted

I’m in a similar situation. My blood tests were negative, but I have symptoms that are related to gluten consumption. And I also have a family member (blood relative) who has celiac. I don’t rely on the tests because I’d already been off gluten for approx. 2 weeks prior to testing. Thanks to this forum, I’ve found out that many people make this mistake.  

Well, I’d be happier if I had an official diagnosis.. maybe I could have it if I did a gluten challenge.. but I don’t really want to do it. I’d say the diet is not a problem for me as I’m not tempted to cheat and I like cooking so that makes things easy :)  

As for the withdrawal symptoms.. yes I’ve had stomach cramps, headaches and lightheadedness too. My headaches/migraines have almost disappeared.  I still feel lightheaded though.. feel like I’m on drugs most of the time.. haven’t figured that out :)

2 hours ago, HARRYE10 said:

I have been off gluten since Wednesday night but I still haven't been feeling right.

It’s been 5 days. Withdrawal symptoms can last for weeks – be patient :)

Good luck :)

 

Feeneyja Collaborator
Feeneyja
Posted

Just want to chime in that I too was negative (8 week gluten challenge, I had bee gluten free for two years for my daughter who is also gluten intolerant) and it took at least a month to feel better. Some symptoms resolved quicker than others.  The bloat was the first to go.  But the dizziness and problems with eye focus took longest. The constipation and mucus took several weeks too.  Also sores in my mouth took a while. 

Celiac or not, an immune system reaction to gluten takes time to recover from.  

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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
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    • 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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