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Is It Celiac?

BrittLoves2Run

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BrittLoves2Run Apprentice
BrittLoves2Run
Posted

Hello!

I

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Takala Enthusiast
Takala
Posted

Could be, or also could be gluten intolerance. In that case, the celiac panel blood tests will come back negative. :ph34r:

If your blood tests come back negative, and you are not getting a biopsy, the next time you get one of those "mystery" rashes have them biopsy the skin next to it for DH, which could get you a positive diagnosis of celiac. After testing has been exhausted, try going on a gluten free diet anyway to see what happens, as your symptoms match having a gluten problem.

Don't forget that all your medications will have to be gluten free, also.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

Could be, or also could be gluten intolerance. In that case, the celiac panel blood tests will come back negative. :ph34r:

If your blood tests come back negative, and you are not getting a biopsy, the next time you get one of those "mystery" rashes have them biopsy the skin next to it for DH, which could get you a positive diagnosis of celiac. After testing has been exhausted, try going on a gluten free diet anyway to see what happens, as your symptoms match having a gluten problem.

Don't forget that all your medications will have to be gluten free, also.

So this might seem like a stupid question, but what is the difference between Celiac and Gluten intolerance? What do you do to deal with Gluten intolerance?

I'm really anxious to get to the doctors tomorrow. I don't want to put myself on a gluten-free diet if it's not necessary as it seems like a HUGE change.. and it's also expensive, but i'd like to do anything I can to start feeling better.

Aly1 Contributor
Aly1
Posted

Celiac disease is a manifestation of gluten intolerance where the villi of the small intestine are attacked and a variety of symptoms follow. It is auto-immune in nature. Non-celiac gluten intolerance basically means the bad reaction to gluten effects areas other than the small intestine - and it can really effect any area and cause numerous symptoms from headaches to neurological symptoms to...brain fog and inability to think clearly, lol, which is happening to me right now. Anyway I'm sure others can fill in the blanks. The point is - if your celiac panel comes back negative it means one of two things:1) it was a false negative which is possible or 2) you do not have celiac. There is no way to test for non-celiac gluten intolerance - but it is just as severe and can have a major impact on one's health. So, once you have exhausted all testing - do note, you need to be eating a regular gluten diet in order for celiac tests to show anything - you should try going gluten free for a good stretch of time, at least a month or two. If gluten is a problem for you, you will likely start to feel better quickly.

The symptoms you listed could definitely be gluten-related. I hope they are, so you will be able to start healing ASAP. Good luck.

Aly1 Contributor
Aly1
Posted

Ps. Yes it's hard, but believe me, we wouldn't all be eating that way if it didn't make us feel So Much Better. And that's pretty much priceless!

Aly1 Contributor
Aly1
Posted

And another note - if gluten does Not turn out to be a problem for you - I get deep aching pain in my bones from eating sugar and variety of other things too lengthy to list here. I also got it from gluten. Point is there are many things that we eat that can cause pain and do harm so gluten may not be the end of your need to explore diet as a possible cause. You've found a great resource here on this forum, the people here are so helpful and can offer guidance every step of the way.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

And another note - if gluten does Not turn out to be a problem for you - I get deep aching pain in my bones from eating sugar and variety of other things too lengthy to list here. I also got it from gluten. Point is there are many things that we eat that can cause pain and do harm so gluten may not be the end of your need to explore diet as a possible cause. You've found a great resource here on this forum, the people here are so helpful and can offer guidance every step of the way.

Thanks for your response! I had my doctor appointment this morning. My doctor seemed very apprehensive about testing me for Celiac. He basically said it's a pain in the butt to diagnose. I get that, but I'm sick! and i'm tired of being sick. So I insisted that we do it anyway. He asked me if my family had any problem with Thyroid problems. I never thought about the correlation. Every woman in my family has an underactive thyroid and my mom has a lot of the same gastro problems as I do. So he did the Celiac panel and a thyroid test. I'll see what comes of it.

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  • Recent Activity

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      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
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      My only proof

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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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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