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130 Days Without Cc... Reset


EmiPark210

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EmiPark210 Contributor

I got glutened this weekend. I went home for Thanksgiving, and while my parents are amazingly supportive and helpful, something still slipped through. I didn't recognize that it was gluten until the gut sick started yesterday. I thought I was just tired/dehydrated/stressed and all that. I remember from the last couple times I got traces or those couple times I ate something with wheat (oops) it was all over in 3-4 days. But its been 5 and I'm still having trouble eating because all food and food smells are making me nauseous and my gut is still a balloon. This, of course, is not helpful to recovering back to normal but I was wondering if anyone had any suggestions. 

 

This has also been the longest stretch I've gone without any CC issues since I had my endoscopy in April so is it possible my reaction is just getting worse because its been so long?


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cyclinglady Grand Master

This is just me, but I only had anemia when I was diagnosed.  Now, if I get accidentally glutened, I definitely get sick with tummy issues, body aches, fatigue and crazy itching on my arm, but no rash!  Takes me about a week to feel good.  Others here can be affected longer.  My husband seems to recover in just a day or two, but he's been gluten-free for 12 years and his intestinal tract is probably 100% healed.

 

I eat simple comfort foods and take L-glutamine and probiotics to speed healing.  Not sure if it works, but my brain thinks so and that's what counts!  

cap6 Enthusiast

It really varies from person to person.  Some people find that their symptoms get worse as they heal, others find symptom all but disappear.  I am goinf on 4 years and have had a combo of both.  For the first 18 mo or so my symptoms were far worse if glutened.   Now I find that if glutened the symptoms have almost all but disappeared which means I must be all the more careful not to get anything.  But then the last time I was glutened was almost a year ago so.....  everyone is so different.

notme Experienced

i like to think this way:  i feel pretty good almost every day, now that i am healing.  when i was still consuming gluten, i felt BAD every day, but it came on so gradually that i didn't notice it (just a little worse, tired-er, headache was constant, etc, and of course the big D).  and that was the effects of the gluten reaction (plus gut damage)  so, now, when i get gluten, i feel that same bad-ness, only it comes on all at once, in a matter of days, not gradually.  it's the same, just more evident because you're going from feeling pretty *fine*  :)  to feeling like crap pretty fast as a reaction to gluten.  because, i get all the same symptoms that have gone away (except when i get glutened) - no new symptoms - just all at once like getting hit by a truck - POW!! :blink:   if that makes any sense, lolz, it's just my theory.  <also, pretty evident that i, indeed, have been glutened - it's not the flu, it's not food poisoning, it's gluten........ :wacko:   go directly to bed, do not pass go, do not collect 200 dollas  <_<

 

i take extra probiotics, take long hot showers, drink lots of water, blah, blah, blah <just makes me feel like i'm being proactive.  it still takes 14 days to run it's course.   i hope you feel better.

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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