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Love To Hear Your Stories ?


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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    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
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    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
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      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
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