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Am I Celiac?


Brass

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Brass Newbie

How many  times have you been asked that question?

Hello - I'm an english woman (54 years old), living in France and I know I need to seek medical advice but I am trying to gather as much information as possible before I do so... which hopefully you can help me with?

I suffered from autoimmune hypothyroidism, but had my thyroid removed due to thyroid cancer.  My mother suffered the same and also MS so we have a history of autoimmune disease.

I have had a history of stomach issues for decades.  I have been told it was IBS?  I also suffered from a burst appendix as a child and am told my stomach pain is a result of adhesions?  I had my gall bladder removed 2 years ago and I do suffer with a lot of and lots colds and coughs... much more so that my family.

When I eat pasta and pastry in particular I suffer with hang-over symptoms the following day along with sinus pain.  If I avoid bread for a period and then eat some I have the same symptoms.  I get a lot of headaches and reflux.

I am very often tired - not sleepy but achingly tired.  More recently I have noticed my joints ache and my joints feel tender all the time.  I have a dull ache between my shoulder blades and my tongue feels like it's been scolded.  I also suffer from bloating and wind. 

I have trouble sleeping and when I do sleep well I often wake feeling unrefreshed.

I dont suffer from diarrhea... I can get constipated even though I eat a healthy and balanced diet.  

I am a little overweight - I have struggled with my weight for most of my adult life.  As a result I try to eat as healthy as possible as I am always aware of my weight.  I walk a lot, I walk long distance walks (200km to 1000km) so I am reasonably fit.  I am a singer and so my job is also active.

My symptoms recently have been worse and I wondered if this was due to my thyroid medication so I had a blood test.  My Vit D2/D3 is below the lower range, my iron and B12 levels are in the bottom end of the range and my potassium levels are slightly raised.  

Is it possible that I am celiac?  I have thought for a long time that I am really sensitive to wheat.  But I've kind of refused to consider the celiac option because I dont want it!  But... has the time come for me to face up to this?  

I'm 54 and an active woman but recently I feel like I've aged 20 years?

Any and all guidance is very welcome

Thank you


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ravenwoodglass Mentor

Welcome to the board. You do sound like you could be in the right place. Testing for celiac would be a good idea with your symptoms and medical history. You do need to be eating a regular gluten diet for testing though. If you have been gluten free or gluten light that can cause a false negative. You don't have to eat a lot. A couple slices of bread worth a day for 3 months or so before testing if you have been gluten free. You might be able to get away with a shorter time if you have just been gluten light.

 

Celiac's Wifey Explorer

Hi Brass,

As you suspect thyroid disease, other autoimmune, GI issues including constipation, brain fog, fatigue, joint pain, the vitamin deficiences and more can all be closely associated with undiagnosed celiac disease.

I think you posted here to confirm your 'gut feeling' that your health just isn't right, and to figure out if this is the likely cause. This link might help you sort through that: Open Original Shared Link

I think you don't need to actually register and print out the full checklist to find it helpful --  just seeing in print 'commonly associated' may help with the process of gearing up the energy for appointments & med tests.

As for your Q title? I'd say, quite possibly.

It is about a 1 in 100 chance even if you are 'symptom free' and with a family history of autoimmune+many potential symptoms... I'd say it is not at all unlikely. You might want to go in requesting a full celiac panel just so you don't have to double efforts if you get an equivocal result.

My husband & at least one daughter are celiac, and the others girls are at high risk because of the superstrong family history. As someone who just went gluten free and made our whole house gluten free (crosscontamination for confirmed family members and broader health concerns about my own autoimmune system/ family history+finding out I have at least one permissive gene) I'd say nowadays the diet is not-so-bad compared to the many myriad health problems you will face if you stay in denial. (My husband has sortof sad-hilarious horror stories about trying to eat a GFD thirty years ago when he was first diagnosed.) Before your testing though, eat a tasty French croissant for me. That may be one of the only things I will truly miss.....

Good luck on your journey! 

 

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    • knitty kitty
      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
      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
      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
      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
      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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