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glutenfreegirl

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glutenfreegirl Enthusiast

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

My signature pretty much says it all! ;)

Live2BWell Enthusiast

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

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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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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