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summer94

*obligatory help with my results post* :)

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OK, 

Bare with me!

I am 39 years old, officially dx with fibro, cfs, mthfr 677, chronic low d and am very high risk for other AI like lupus, sjorgens, RA etc (sister has 9 major AI so far)

Back in April I was dx with hashimoto's and told I need to go on a gluten-free diet. I begrudgingly did. Well, I did the AI protocol diet. VERY much to my surprise, the only thing I reacted to was gluten. I did NOT want to believe it, because bread. So I took it away, brought it back, a few times. Each time reacting with swollen hands, sleepiness, body aches, bloating and the feeling of an alien trying to claw it's way out of my gut. 

So fast forward, I've been gluten-free for about 7 months, feel awesome. Fibro/cfs symptoms pretty much gone. Then I accidently got some gluten (was given a regular hamburger bun without my knowledge), I thought my gut was literally going to explode out the front of me the next day, it was awful.

So that got me thinking, maybe I'm celiac. But also, maybe my middle son is also. Both of us are thin. Like THIN. I know I had malabsorption issues as a kid. I was 14, freshman in hs and weighed 63lbs (I'm not short either). Gained 30lbs that year thanks to finally going through puberty (was the last in my class). My middle son now is 14 1/2, only 5'1 and 90lbs and hasn't really grown in the last 1 1/2 years. He's just like me. Very thin, very pale, etc. Both of us get nauseous very easily. (Until I went gluten-free, then it went away!) I really feel we both had malabsorption issues. So that got me thinking maybe he has celiac as well, he looks just like me. Oh, we come from a very tall, but very thin family.

So I pulled our 23andme results to see what it said about celiac. I am a DQ8 carrier, my kiddo, he's a dq8 and dq2 carrier :(

So I talk to my dr, well a PA that helped me with the hashi's and said I want to be tested. She thought I was nuts because I'd have to eat gluten. She went ahead and ordered my test and told me to eat a lot of gluten for the next couple of weeks. I did so for a week and a half and my alien gluten baby came back raging. He was pissed!

I did it, took the test and got my results. Neg. ugh. Maybe I didn't eat gluten for long enough?

Should I do another one?? I just feel like having something "official" will get dr's and others to take me serious. I'm getting my son (currently not gluten-free) to the dr next week to talk about testing. He's just not growing. He should be well on his way to being over 6 ft tall (all the men on both husband and my side are 6 ft- 6'7", the women avg around 5'10), yet I'm the second shortest at 5'6. 

Thoughts??

 

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Celiac.com Sponsor (A8):

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I have the HQ8 gene as well and not the HQ2.  I also tested negative on my celiac panel.  I have AIH and chronic iron deficiency anemia.  I'm getting an EGD with biopsies and a colonoscopy January 8 to see what's going on.  You know yourself best and if you feel this is what is going on, you should push for a diagnosis.

I'm not sure you were eating gluten enough to test positive.

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Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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