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What Diseases Were You Diagnosed With After Your Celiac Diagnosis?

Newbee

By Newbee
in Related Issues & Disorders

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Newbee Contributor
Newbee
Posted

I've been gluten free for over 13 months after being diagnosed with celiac disease. I have a lot of damage in my system and may have had celiac most of my life (I'm 38 now). I'm continuing to have issues even though I'm grain free and take a lot of vitamins. I'm curious what diseases others were diagnosed with AFTER their celiac diagnosis. I think I have other stuff going on. Trying to figure out what it might be and what to do about it. Thanks!

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nvsmom Community Regular
nvsmom
Posted

I too believe I was celiac my entire 38 years, and was diagnosed only a couple of months ago.

When I was 19, I developed ITP where my white blood cells mark my platelets to be attacked so I couldn't clot anymore. That almost got me, and resulted in my spleen being removed (spleen kilss whatever the white blood cells attach to). A couple of years later, I thought I was getting RA (even have posite RH factor) but the symptoms went away after a few months; now I guess it was a celiac response.

Less than a month ago I found out my thyroid is quitting on me. I'm guessing it's Hashimoto's but my doctor won't label it at this point... don't quite know why if he's not worried about it being anything else. :rolleyes:

So that's three autoimmune diseases for me at this point. :unsure: At least they were recoverable. :blink:

mopsiecat Rookie
mopsiecat
Posted

I have Hashimoto's and diabetes. My celiac symtoms started three years before the thyroid problem was discovered. Celiac went undiagnosed for eight years. Now for a year I've been pre diabetic. Two of my siblings have celiac, they also have the Hashimotos, and one is also pre diabetic. It does seem that these things go together.

GottaSki Mentor
GottaSki
Posted

I was diagnosed with Celiac Disease at 43 - I am certain I had it my entire life but was dismissed because all of my blood tests were "normal" with the exception of anemia for decades.

When I removed gluten, many of my digestive symptoms improved. Unfortunately my fatigue, joint/muscle pain, fogginess (memory problems and difficulty speaking the words I was thinking) and a few other symptoms got worse or I just was able to identify them better because I wasn't bloated with digestive issues.

At 7 months gluten-free I was diagnosed with Fibromyalgia. It is my belief that Fibro is caused by the body not absorbing the nutrients it needs to function which is caused by Celiac Disease.

Have you tried removing other foods? There are other groups of foods that those with severe celiac damage may not be able to tolerate - which slows healing of the digestive system. The most common are Dairy, Grains, Legumes, Nightshades (tomato, peppers, potato and eggplant). Other folks have problems with eggs, certain fruits, nuts or seeds.

Finding patience is tough when the healing is slow or seems non-existant - hang in there and keep looking for answers :)

Newbee Contributor
Newbee
Posted
  • Author

I have following the SCD diet which is helping but not addressing everything. And ok, I have to admit I've been eating stuff on that diet I shouldn't (like chocolate). I've been wondering about thyroid. And I think I have issues digesting sugar anyway so should probably avoid it regardless if I'm diabetic or not. I feel like I'm at a turning point and I'll either recover from these health problems or they were get worse and kill me. And doctors have not been much help. It is a hard burden to carry. :(

beebs Enthusiast
beebs
Posted

Connective tissue disease. Possible RA or psoriatic arthritis - time will tell. I believe it was probably trigger by eating gluten my whole life when I had celiac symptoms as far back as 6 or 7 years old.

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      By trents · Posted

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

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
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