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Feeling worse?

Jctb

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Jctb Explorer
Jctb
Posted

As of Saturday I have given up gluten again. I had undergone a gluten challenge for my endoscopy. I didn't feel that bad while doing it, I easily could have continued. I did have increasingly bad indigestion and chest pain, but my digestive symptoms were not too bad.

Now is another story, however. My stomach is upset, my heart palpitations and indigestion have remained, and I'm feeling shaky. My digestion has also gotten  worse. Is this typical??I'm so confused. I feel like I felt better last week while eating gluten. 

I should also add that they were checking for other issues and my blood work was indeterminate. 

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Jctb Explorer
Jctb
Posted
  • Author

Would like to add to this- while eating gluten I would get a random hive here or there. Since giving up gluten a few days ago, I've had a hive pop up yesterday and today. I'm at such a loss as to why I'm feeling worse. Is this some sort of detox? Is this something experienced by others?

cyclinglady Grand Master
cyclinglady
Posted

If you do have celiac disease, antibodies can continue to rise and attack for days, week or months after a gluten exposure.  

I hope you feel better soon.  

Jctb Explorer
Jctb
Posted
  • Author
3 hours ago, cyclinglady said:

If you do have celiac disease, antibodies can continue to rise and attack for days, week or months after a gluten exposure.  

I hope you feel better soon.  

Thanks for the reply. That's good to know. 

Jmg Mentor
Jmg
Posted
On 9/18/2017 at 1:13 PM, Jctb said:

Now is another story, however. My stomach is upset, my heart palpitations and indigestion have remained, and I'm feeling shaky. My digestion has also gotten  worse. Is this typical

I felt worse after I restarted gluten free diet after my challenge and had a rougher time than I had first time round. So I don't think its unusual. Give your body time to recover. Eat well, lots of good whole foods, maybe a decent multivitamin etc.  Go easy on processed gluten-free stuff for awhile and avoid oats as well. 

best of luck :)

 

Jctb Explorer
Jctb
Posted
  • Author
3 hours ago, Jmg said:

I felt worse after I restarted gluten free diet after my challenge and had a rougher time than I had first time round. So I don't think its unusual. Give your body time to recover. Eat well, lots of good whole foods, maybe a decent multivitamin etc.  Go easy on processed gluten-free stuff for awhile and avoid oats as well. 

best of luck :)

 

Thanks for your reply. I'm currently grain free, although I ended up making kitchary because I needed something of substance in my stomach. Seems to have helped. Some other symptoms coming on strong, so just hoping I have some answers soon, to make sure I'm at least on the right path!

Ennis-TX Grand Master
Ennis-TX
Posted

There is sort of a detox/withdrawal thing for the first few weeks for most. Keep a food diary, often after a glutening a new intolerance will creep up for awhile. Sort of your body associating another food with gluten, and or it just being picky while damaged. Write down everything you eat, how you fix it, seasonings etc. Change up the diet, and look for patterns.  My own gut is being picky today and had D after 2 meals so I am rotating up and narrowing down the culprit tomorrow myself....only see 4 common things in my food dairy.

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Jctb Explorer
Jctb
Posted
  • Author
11 hours ago, Ennis_TX said:

There is sort of a detox/withdrawal thing for the first few weeks for most. Keep a food diary, often after a glutening a new intolerance will creep up for awhile. Sort of your body associating another food with gluten, and or it just being picky while damaged. Write down everything you eat, how you fix it, seasonings etc. Change up the diet, and look for patterns.  My own gut is being picky today and had D after 2 meals so I am rotating up and narrowing down the culprit tomorrow myself....only see 4 common things in my food dairy.

Interesting- thank you for sharing. I saw my ND yesterday and she also suggested that after having been completely cleaned out for my procedures, my body could be trying to adjust. She is having me take a rest from the strong probiotics I was taking, and I'm focusing on eating foods that are more gentle (I tend to eat a lot of raw, very fibrous foods). 

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    • SamAlvi
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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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      Son's legs shaking

      By knitty kitty · Posted

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      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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