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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
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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