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I am new to Celiac

celiacpaula
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celiacpaula Rookie
celiacpaula
Posted

Hi! All this is new to me. I went for a colonoscopy.  Then my doctor said to stay on a strict gluten free diet but said nothing about Celiac.  Thanks, Celiac Paula

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trents Grand Master
trents
Posted

Welcome to the forum, @celiacpaula!

First, a colonoscopy cannot be used to diagnose celiac disease. Celiac disease causes damage to the small bowel (the part of the intestines just below the stomach). A colonoscopy cannot reach up that far. The kind of scoping that is used for diagnosing celiac disease is called an endoscopy (aka, "upper GI"). Having said that, normally, the first stage of diagnosing celiac disease is to have some blood work done to look for antibodies that are characteristically produced by celiac disease. If the bloodwork is positive, usually there is a consult scheduled with a GI doc for the purpose of having and endoscopy with biopsy of the small bowel lining.

What symptoms are you experiencing?

If you suspect you have celiac disease or another problem with gluten then your first step would be to ask your family physician to run two celiac blood tests: total IGA and tTG-IGA. If the blood testing is positive, then you would likely need a referral to a GI doc for an endoscopy with biopsy. 

But please hear this. It is very important for you to not go on a gluten free diet until you have completed all testing for celiac disease. If you start the gluten free diet now you will sabotage the test results. 

There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) which does not cause damage to the small bowel lining but produces many of the same symptoms as celiac disease. It is 10x more common than celiac disease but there is no test for NCGS. Celiac disease must first be ruled out.

celiacpaula Rookie
celiacpaula
Posted
  • Author

Yes, I  had an upper GI, also. Plus,  I had bloodwork done. I misunderstood. The doctor told me ,to go on a strict gluten free diet. He said nothing about celiac. So in other words, I have celiac? I have other autoimmune disease. My symptoms are many. I am totally confused.  You think my doctor would have wanted to  see me after my results. Thank you for explaining that to me.

trents Grand Master
trents
Posted
(edited)

The doctor dropped the ball. I can't understand why he did not schedule for a follow-up appointment to discuss your results. But he may have elected to not use the term "celiac" because it is unfamiliar to many or most people whereas most people are aware that "gluten" causes problem for some folks for one reason or another. 

It is common for celiacs to develop other autoimmune disorders. 

But let's come at this from a different direction. Do you have access to your bloodwork test results and the upper GI scope/biopsy results? Can you access them online? If you have that information we can probably confirm a celiac diagnosis or point you in the other direction of NCGS if you can post them. If you have bloodwork numbers from the tests we would also need the reference ranges for negative vs. positive since each lab uses different reference ranges. If nothing else, I would contact your doctor and ask for a definitive answer to the question of "do I have celiac disease?"

But this might be helpful to know: Whether or not you have celiac disease or NCGS the antidote is the same. Namely, observing a strict gluten free diet for life.

Edited by trents
celiacpaula Rookie
celiacpaula
Posted
  • Author

Yes, I do have the results, but there's nothing to attach a file to in this page. I could email it. This would be a big help to me. Thank you

trents Grand Master
trents
Posted
(edited)

There is a very short time window allowed for adding an attachment. This is purposeful as it helps thwart spammers. However, when you open a new post window you should see a paperclip symbol at the bottom and a message saying you can also just drag the file over. Having said that, a lot of users complain they cannot do attachments so I'm not sure if that feature is broken or not. Best bet is just to type the test results in manually. 

I'm not comfortable with posting my email address on the forum for public viewing. So, if you will manually enter the test results in your next post that would be best. Remember to include the reference ranges for the tests for what is normal or negative vs. what is positive as there are no industry standards for the reference ranges. Each lab uses their own.

Edited by trents
trents Grand Master
trents
Posted

This may be helpful in understanding what tests are run for celiac diagnosis and which are the most reliable. I should also add that many people are not warned by their physicians that they should not begin the gluten free diet until all testing is complete. Doing so likely sabotages the results and creates false negatives.

 

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celiacpaula Rookie
celiacpaula
Posted
  • Author

Has anyone tried Gliadin? How long has  it been on the market ?  What are your thoughts on this?

trents Grand Master
trents
Posted
2 hours ago, celiacpaula said:

Has anyone tried Gliadin? How long has  it been on the market ?  What are your thoughts on this?

Many have. It's been on the market for years. Many report good results. The manufacturer of Gliadin is one of our forum sponsors. It needs to be understood that the product is intended to protect against minor exposures to gluten such as you would experience with cross contamination in a restaurant. It will not be effective if you throw caution to the wind and pig out on gluten.

celiacpaula Rookie
celiacpaula
Posted
  • Author
38 minutes ago, trents said:

Many have. It's been on the market for years. Many report good results. The manufacturer of Gliadin is one of our forum sponsors. It needs to be understood that the product is intended to protect against minor exposures to gluten such as you would experience with cross contamination in a restaurant. It will not be effective if you throw caution to the wind and pig out on gluten.

Thank you very much.

  • 2 weeks later...
celiacpaula Rookie
celiacpaula
Posted
  • Author

 The file is too big. I dont know how to make it smaller. Sorry!

trents Grand Master
trents
Posted
(edited)
4 minutes ago, celiacpaula said:

 The file is too big. I dont know how to make it smaller. Sorry!

Download a free program called Irfanview. Use the resampling tool to reduce the number of pixels in the picture.

Edited by trents
celiacpaula Rookie
celiacpaula
Posted
  • Author

thank you

 

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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