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Changing symptoms

Jctb

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Jctb Explorer
Jctb
Posted

Hello! Quick background- was off of all grains for 5 weeks, then slowly started every couple of days for 3 weeks. Got sick, surprise bloodwork. Level was 24 (positive is 25). I'm currently on week 2 of a gluten challenge awaiting my endoscopy. Here's the thing. I don't feel as terrible as I expected (knock on wood). I had one day where I felt really nauseous. But my stomach has been acting differently (no bloating, I think I've lost weight). I have darker circles and I think my mood and joints have been achy (but weather and change with kids back to school can do things like that). Now, don't get me wrong, my digestive system still doesn't feel great, but it never has (even when grain free I was still having some issues). Has anyone had anything like this happen? My stomach is flatter than normal, whereas I used to notice lots of bloating by the end of the day. I assumed that was gluten when I got the positive blood test. I have also given up dairy- maybe that was the cause?

Hopefully I don't start feeling terrible now that I've written this...I just didn't expect to feel only a little worse, if that makes sense?

 

Thanks

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cyclinglady Grand Master
cyclinglady
Posted

Celiac symptoms can wax and wane.  Each set of glutenings for me has brought forth new symptoms.  So much so, that I have consulted with my GI only to find elevated celiac antibodies blood tests.  Prior to my diagnosis, I only suffered from anemia.  Looking back for years and years, I have suffered a variety of symptoms that were probably celiac-related.  

You can be lactose intolerant too (permanent or temporary depending on your genetic make-up).  Eliminating it during a challenge is fine.  It might help keep your celiac symptoms from being really bad.  

Go eat some sourdough bread for me!  

So, it is difficult to know based on symptoms.  Hang in there!  

 

Jctb Explorer
Jctb
Posted
  • Author

Thanks! I am very curious to see the results of all the testing. It's son confusing feeling well then unwell, etc, with what seems to be no explanation.

I had some delicious sourdough with jam for breakfast yesterday. Definitely trying to enjoy all these goodies while the opportunity is here, haha.  

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

I explained to Dr that I knew my challenge would be just that. I self imposed gluten-free. diet prior to diagnosis ( not ideal, and I don't advocate it, but some of us do it out of desperation at being missed).  I was put on antihistamines and h2 blocker to aid my symptoms during the challenge. I still struggled due to my symptoms to complete the challenge. My other intolerances were revealed I didn't realize I had. Funny how gluten can fool the medical industry into thinking some of us have other environmental allergies manifesting -when food is actually the causative agent. Took me 4 decades, a diagnosed cousin , and a string of Drs to get to one who saw it and sent me to a celiac team to check it out. It was so nice not to be written off as just crazy.

My symptoms were more extreme having been off gluten for a few years, for me the lack of bloating during the  challenge I believe was controlled by the meds during the challenge to help me actually be able to consume it. I was unable to finish my challenge. My symptoms became worse with age and after being gluten-free . I believe my immune system downgraded knowing gluten was gone. My body was angry at it's return. I've spent months apologizing to it. 

I'm just under a year from my challenge. I didn't lose much weight, but definitely lost nutrients and damaged myself . The weight is returning and I finally found a supplement I don't react to. Now that joint pain is alleviating I got much to do gym wise.

The silver lining is my son now knows he has issues as well and he hopefully will avoid the decades of damage my cousin and I have. When I get new insurance I will see if my  cousins Gi is covered and begin to see him. He is closer to where I live then where I was diagnosed. 

It's possible that the amount of gluten reintroduced in the challenge  has been gradual and controlled versus a regular full on gluten diet and the body is less angry. I'm glad you are able to comfortably perform the challenge. May your diagnosis be swift and uncomplicated so you are on your road to recovery. If not confirmed-  never a bad idea to keep a food diary to rule out other food intolerance s. I had numerous manifest after the challenge and am still very heavily whole foods diet and paleo today.

Good luck

Jctb Explorer
Jctb
Posted
  • Author
1 hour ago, Awol cast iron stomach said:

I explained to Dr that I knew my challenge would be just that. I self imposed gluten-free. diet prior to diagnosis ( not ideal, and I don't advocate it, but some of us do it out of desperation at being missed).  I was put on antihistamines and h2 blocker to aid my symptoms during the challenge. I still struggled due to my symptoms to complete the challenge. My other intolerances were revealed I didn't realize I had. Funny how gluten can fool the medical industry into thinking some of us have other environmental allergies manifesting -when food is actually the causative agent. Took me 4 decades, a diagnosed cousin , and a string of Drs to get to one who saw it and sent me to a celiac team to check it out. It was so nice not to be written off as just crazy.

My symptoms were more extreme having been off gluten for a few years, for me the lack of bloating during the  challenge I believe was controlled by the meds during the challenge to help me actually be able to consume it. I was unable to finish my challenge. My symptoms became worse with age and after being gluten-free . I believe my immune system downgraded knowing gluten was gone. My body was angry at it's return. I've spent months apologizing to it. 

I'm just under a year from my challenge. I didn't lose much weight, but definitely lost nutrients and damaged myself . The weight is returning and I finally found a supplement I don't react to. Now that joint pain is alleviating I got much to do gym wise.

The silver lining is my son now knows he has issues as well and he hopefully will avoid the decades of damage my cousin and I have. When I get new insurance I will see if my  cousins Gi is covered and begin to see him. He is closer to where I live then where I was diagnosed. 

It's possible that the amount of gluten reintroduced in the challenge  has been gradual and controlled versus a regular full on gluten diet and the body is less angry. I'm glad you are able to comfortably perform the challenge. May your diagnosis be swift and uncomplicated so you are on your road to recovery. If not confirmed-  never a bad idea to keep a food diary to rule out other food intolerance s. I had numerous manifest after the challenge and am still very heavily whole foods diet and paleo today.

Good luck

Goodness...so sorry you've had such a rough time. And also, I'm sorry you have to deal with insurance issues. As a Canadian it's not something I've had to even think about. 

I'll for sure be having my kids checked if I results come back positive. We do have to pay for that bloodwork ($60), but it may be covered by our additional insurance through my husband's work.

I have a friend who I see almost daily, and she's convinced the dark circles are getting worse as the days go on. I'm also sure I have other intolerances, I can't eat rice or oats, so I avoid those. I'm not eating a ton, which is probably why I'm losing weight :(

Take care, and thanks for your response.

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