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glutenfreegirl

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glutenfreegirl Enthusiast
glutenfreegirl
Posted

Hi there everyone

I am new to al of this and with all the weird symptoms I have had over the last year and a half tests and frustration finally came down to celiac.

Would love to hear all of your stories/ symptoms etc on your road to celiac discovery I think it would be great to know I am 1) not alone 2) not a hypoconriact as we all think we are or better yet are made to feel :( on this journey to health discovery.. It is a lonely feeling tring to explain to people you just don't feel right becasue of this that or the other and you can tel they think of for goodness sake take a pill and move on...but you know it is soooo much more than that...

So to anyone intersted Iwould love to share in your personal stories

Enoy your gluten-free day

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curlyfries Contributor
curlyfries
Posted

My signature pretty much says it all! ;)

Live2BWell Enthusiast
Live2BWell
Posted

Hi There! I am very new to this also, so I completely relate! I actually posted a similar thread wanting to hear other's stories.

As for me, and my story. My signature says a bunch - but, basically I have been sick with various problems for quite a while now. I was diagnosed with insulin resistance, and then autoimmune issues followed. Around this time I began having GI problems and what appeared to be some type of skin rash (little red bumps, randomly on my body but mostly concentrated on my righ forearm and upper arm.) I also became very itchy, I'd itch so much I'd bleed. I had a smorgasboard of health issues and did so much bouncing from one doctor to another, some of which said perhaps it was psychosomatic. I too felt like a hypochondriac, and the doctors didn't help any. Nobody seemed willing to listen to me, and stick with me long enough to figure things out. Other doctors just referred me out. It has been a medical nightmare. I basically had to become my own doctor, and it just so happened around the time I found this board I started seeing a new set of doctors (internal medicine and GI). I was seriously hesitant about going gluten free (you can read my threads of back-and-forth) but I have been gluten free for a week, and honestly - I have noticed quite a difference, it's interesting, strange, unbelieveable, but very very cool.

I personally suggest learning about gluten intolerance. A book I found VERY helpful was "Gluten Free Living for Dummies" by Danna Korn. My copy has been a lifesaver, as has this forum!

Welcome to the board, and feel free to msg me anytime. Hang in there (( Hugs ))

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

I think my son is a wonderful success story. He has always had ear infections, probably one every other month since he was born. He had tubes twice and his adnoids removed but that didn't help. He has also always been a picky eater. He would eat a cracker all day, that's it. He started to fall off the growth charts when he was 3. He went from the 90th %tile to the 3rd %tile. His doctor ran all the tests, including Celiac (I did not know that at the time) but everything came back normal. When he was 4 the leg cramps and stomach aches started. We chalked it up to starting preschool, nerves, being more active, etc. By the time he started first grade he was a full head shorter than the rest of his classmates. He was about 35 pounds. He had a pair of shorts that were size 24 months that he could still fit into. He had his 10 foods that he would eat and they were breaded items, pasta, things full of gluten. He had dark circles under his eyes and he was catching every cold and flu going around. At his next yearly checkup I insisted the doctor run tests again. I had no idea what tests to request but my son was wasting away before my eyes and something needed to be done. They took TEN vials of blood (he was so brave) and tested him for everything under the sun. His doctor called me a week later and said his numbers were off the charts for Celiac and she had never seen anything like it in a child. The doctor was wonderful. She called a GI herself and got him an appointment two weeks later (the GI had a 3 month waiting list). The GI did an endoscopy two weeks later and said he had severe damage. This was in March of this year. Fast forward to now, 5 months later. He has gained 7 pounds, grown 3 inches, and hasn't been sick one time. The leg cramps are gone (except when he has an accidental glutening) and the stomach aches are gone. He has tons of energy. He is a different kid. I am so thankful for the gluten free lifestyle. I am a huge advocate for living gluten free now. I tell everyone about it and what a miracle it has been for my son (and me).

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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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      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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