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I’m 38, diagnosed hashimotos age 11, fluctuation symptoms for celiac, chose to go gluten free 6wks before my wedding, felt amazing and lost all my bloat, abdo pain, constipation and fluid retention. After honeymoon started gluten challenge pre blood test. I lasted 27hrs and ended up at doctors due to severe bloating causing shortness of breath, abdo pain, sweating, dripping nose (weird!), feeling extremely emotional (wanting to cry and feeling low), difficulty sleeping, laying down with my stomach so distended made me want to vomit, finding it hard to get fluids in because of feeling so full all the time. I almost broke down because I couldn’t see another day of gluten challenge and it’s recommended 4wks....

Doctor told me to cut back on gluten, because reaction was so obvious and I’ve also tested positive as a gene carrier, i can get celiac blood test done in 7 days (allowing time for current reaction to create antibodies).. that’s if I am celiac. 

I stopped intentionally gluten loading 4 days ago and still have abdo swelling. New symptoms appeared this time, day after seeing doctor I woke up with swollen face and extremely puffy eyes (particularly under eye) and found it hard to see. This lasted the whole day and slept the whole day through and that night. I was extremely itritable and down and for the 1st time a headache lasting 3 days even into back of my neck finding moving head uncomfortable.

I could go on with the years of symptoms I’ve experienced... I guess I’m on here hoping to hear from others if the face/eye swelling has happened to others, similar type headache, narcolepsy type reaction (just needing to sleep deeply) and has anyone else had testing so early after a reaction.

I find the more I chose to stay away from ‘obvious’ gluten foods, when I do reintroduce them my body reacts worse each time. Has this happened to anyone else this way?

I’m clearing hoping I’m not celiac, reading  other members stories it’s not something to want to have, and have upmost respect for what you all go through on a daily basis. guess I’m just wanting answers and correct diagnosis. Hoping to start trying for our 1st child asap so need to know... guess this is another reason for the rush on the blood test... 

I get my blood test in 2 days, at the doctors for results in 3 days ?

 

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8 hours ago, MM79 said:

I’m 38, diagnosed hashimotos age 11, fluctuation symptoms for celiac, chose to go gluten free 6wks before my wedding, felt amazing and lost all my bloat, abdo pain, constipation and fluid retention. After honeymoon started gluten challenge pre blood test. I lasted 27hrs and ended up at doctors due to severe bloating causing shortness of breath, abdo pain, sweating, dripping nose (weird!), feeling extremely emotional (wanting to cry and feeling low), difficulty sleeping, laying down with my stomach so distended made me want to vomit, finding it hard to get fluids in because of feeling so full all the time. I almost broke down because I couldn’t see another day of gluten challenge and it’s recommended 4wks....

Doctor told me to cut back on gluten, because reaction was so obvious and I’ve also tested positive as a gene carrier, i can get celiac blood test done in 7 days (allowing time for current reaction to create antibodies).. that’s if I am celiac. 

I stopped intentionally gluten loading 4 days ago and still have abdo swelling. New symptoms appeared this time, day after seeing doctor I woke up with swollen face and extremely puffy eyes (particularly under eye) and found it hard to see. This lasted the whole day and slept the whole day through and that night. I was extremely itritable and down and for the 1st time a headache lasting 3 days even into back of my neck finding moving head uncomfortable.

I could go on with the years of symptoms I’ve experienced... I guess I’m on here hoping to hear from others if the face/eye swelling has happened to others, similar type headache, narcolepsy type reaction (just needing to sleep deeply) and has anyone else had testing so early after a reaction.

I find the more I chose to stay away from ‘obvious’ gluten foods, when I do reintroduce them my body reacts worse each time. Has this happened to anyone else this way?

I’m clearing hoping I’m not celiac, reading  other members stories it’s not something to want to have, and have upmost respect for what you all go through on a daily basis. guess I’m just wanting answers and correct diagnosis. Hoping to start trying for our 1st child asap so need to know... guess this is another reason for the rush on the blood test... 

I get my blood test in 2 days, at the doctors for results in 3 days ?

 

I am sorry that you are unwell!  

I am concerned that your doctor is not following normal guidelines for diagnosing celiac disease.  A gluten challenge is usually 8 to 12 weeks prior to the blood test (2 to 4 prior to endoscopy) as recommended by leading research centers:

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

The actual screening tests:

http://www.cureceliacdisease.org/screening/

http://gut.bmj.com/content/early/2014/06/10/gutjnl-2013-306578

You can go forward with the blood test to see if you have enough antibodies to be measured.  However, if the tests are negative, you can not rule out celiac disease.  You might consult with another doctor who is celiac-savvy. 

It sounds like you have celiac disease, but you can not tell by symptoms alone since they overlap with many other illnesses.  You can continue to go gluten free, but for life.  

I wish you well! 

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My answer isn't all that helpful, more in the spirit of empathy since I am still in the process of diagnosis and can't say celiac or intolerance at this point. But before going gluten free I had many a morning with a puffy face and an aching neck and migraine. From what I've read it is a sign of inflammation/inflammatory disease. I tend to get joint swelling in my fingers and ankles and pain at the same time. Narcolepsy, abdominal swelling and fatigue were common for me too. I haven't tried the challenge yet since I went gluten-free first.  Good luck with your testing, I hope you are able to go back to being gluten-free soon! 

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22 hours ago, cyclinglady said:

I am sorry that you are unwell!  

I am concerned that your doctor is not following normal guidelines for diagnosing celiac disease.  A gluten challenge is usually 8 to 12 weeks prior to the blood test (2 to 4 prior to endoscopy) as recommended by leading research centers:

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

The actual screening tests:

http://www.cureceliacdisease.org/screening/

http://gut.bmj.com/content/early/2014/06/10/gutjnl-2013-306578

You can go forward with the blood test to see if you have enough antibodies to be measured.  However, if the tests are negative, you can not rule out celiac disease.  You might consult with another doctor who is celiac-savvy. 

It sounds like you have celiac disease, but you can not tell by symptoms alone since they overlap with many other illnesses.  You can continue to go gluten free, but for life.  

I wish you well! 

Thank you cyclinglady for taking the time with sending so much info ☺️

Ive cut back on gluten but still maintained some intake daily since I started challenge, I’m just not able to do gluten every meal. 

Because I was mindfully excluding  obvious gluten foods for 6wks my GP & nutritionalist/dietician thinks there might still be enough evidence in doing bloods early, but being mindful that it could be too early for a successful test, I’m doing my best to eat some form of gluten when able incase I need retesting in a few weeks...

bloods tomorrow.. will keep you posted ?

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22 hours ago, LAR2017 said:

My answer isn't all that helpful, more in the spirit of empathy since I am still in the process of diagnosis and can't say celiac or intolerance at this point. But before going gluten free I had many a morning with a puffy face and an aching neck and migraine. From what I've read it is a sign of inflammation/inflammatory disease. I tend to get joint swelling in my fingers and ankles and pain at the same time. Narcolepsy, abdominal swelling and fatigue were common for me too. I haven't tried the challenge yet since I went gluten-free first.  Good luck with your testing, I hope you are able to go back to being gluten-free soon! 

Thank you LAR2017! I find it interesting to hear and read other people’s experiences.. yesterday my mouth ulcers  started again, along with restless legs with pain in neck to shoulders and in lower back starting in the afternoons ?? still waddling round looking 6-7months pregnant and constipation getting quite painful... bloods tomorrow results day after.. hoping for some answers so I can go back to the foods that my body appreciates and deflating to an acceptable waist circumference!

are you considering the gluten challenge? I was so scared to do mine (for this exact reason, I knew I’d be uncomfortable and quite miserable!) I got the gene test 1st hoping I was negative so I didn’t have to go through this... I was positive.. and I was right... it’s a struggle... day 7 in and I can not fit into any of my clothes I’m so big and bloated, I’m guesstimating I’m up about 3 dress sizes since last week..

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27 minutes ago, MM79 said:

Thank you LAR2017! I find it interesting to hear and read other people’s experiences.. yesterday my mouth ulcers  started again, along with restless legs with pain in neck to shoulders and in lower back starting in the afternoons ?? still waddling round looking 6-7months pregnant and constipation getting quite painful... bloods tomorrow results day after.. hoping for some answers so I can go back to the foods that my body appreciates and deflating to an acceptable waist circumference!

are you considering the gluten challenge? I was so scared to do mine (for this exact reason, I knew I’d be uncomfortable and quite miserable!) I got the gene test 1st hoping I was negative so I didn’t have to go through this... I was positive.. and I was right... it’s a struggle... day 7 in and I can not fit into any of my clothes I’m so big and bloated, I’m guesstimating I’m up about 3 dress sizes since last week..

)-: I don't know if I will do the challenge or not. I think to be absolutely sure I would have to do it for at least 6 weeks. If I did it for a short time and then was negative I would always wonder about it. What you are experiencing is why I am hesitating. Also, I took the gene test as well and am negative for the 2 major Celiac genes, although positive for several minor ones and a flock of other autoimmune issues. So that really puts me on the fence. There is no doubt I have a strong inflammatory response to gluten and even 5 months after quitting it I'm running a high c-reactive protein test that my GI is trying to track down. I am having a colonoscopy (whee!) to rule out Crohn's before trying the challenge. In fact, I will probably try to rule out just about EVERYTHING before trying the challenge. LOL! Best of luck. 

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