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Still Healing Vs. Being Glutened


pochtas2003

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pochtas2003 Newbie

I was diagnosed with Celiac disease about a month ago. Two weeks after my diagnoses, I felt great. Pretty much back to normal. I think that I was glutened unknowingly and it has been over a week and half and I still feel sick. IBS symptoms, muscle cramps, tired all the time. I've been trying to be extra careful about what I eat to make it doesn't have any gluten, but I'm still sick. Not sure if I'm still healing or if I'm ingesting gluten without knowing it.

 

Any advice or tips to feel better would be much appreciated.

 

Thanks


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notme Experienced

it takes awhile for the gluten reaction to go away.  if i get 'glutened' i feel it (full on!) 2 days later and then it takes another 12 days to go away  :(  you are very new - have you read the newbie 101 thread?  lots of info to help you avoid pitfalls, especially early on.  welcome to the best club you never wanted to join  -_-  hope you feel better soon.

tka Apprentice

I was diagnosed with Celiac disease about a month ago. Two weeks after my diagnoses, I felt great. Pretty much back to normal. I think that I was glutened unknowingly and it has been over a week and half and I still feel sick. IBS symptoms, muscle cramps, tired all the time. I've been trying to be extra careful about what I eat to make it doesn't have any gluten, but I'm still sick. Not sure if I'm still healing or if I'm ingesting gluten without knowing it.

 

Any advice or tips to feel better would be much appreciated.

 

Thanks

I was diagnosed about 2 months ago. It's an up and down ride and very difficult to know when you are glutened by cross-contamination, especially if you are still eating out any. I hadn't eaten out for a while until yesterday, then I really did it. We had a birthday lunch at work and my brother's birthday dinner too. I did not eat anything with gluten that I am aware of, but must have been cross-contaminated because I'm paying for it now. Will have the bloating and gas, headache, muscles aches, fatigue that can last up to 5 days or more. From what everyone on this forum has said, It can take months for you to really feel better consistently. Don't get down on yourself and don't get discouraged ( I need to remember that myself!)

A couple of other things I learned from this site that my doctor never said anything about:

1. Once you go gluten free, the reactions are much worse than before.

2. Check all of your meds for gluten.

3. Get really good at knowing how they put hidden gluten in your food and note if a food was made in a facility other than completely gluten free. Even though it is a gluten free food itself, you can be cross-contaminated.

4. Check your makeup and personal care products for gluten (including toothpaste).

5. Buy your own butter, peanut butter and condiments and label them so no one sticks a knife into them with gluten on their utensil and spreads it to the container.

6. Get a new toaster that only you use so you don't transfer gluten from someone else that way.

7. Invest in at least one pot or pan that can be designated for gluten free use only...don't reuse one that is Teflon or such coated. Buy a new spoon for stirring too.

8. Many people can't eat milk products when first diagnosed.

9. Many people can't eat oats either. They can easily be cross-contaminated in the processing.

10. Make sure your doctor has checked other markers in your blood for things like anemia, low B12, low D3, as you may need replacement until you heal.

Sorry if this is a lot. I know it can be overwhelming. I wanted to try to put all of this in one place for you. If you search items from this list in the forum, you will find threads that go into greater detail on each area. They have been a lifesaver for me. Hope you feel better soon.

it takes awhile for the gluten reaction to go away.  if i get 'glutened' i feel it (full on!) 2 days later and then it takes another 12 days to go away   :(  you are very new - have you read the newbie 101 thread?  lots of info to help you avoid pitfalls, especially early on.  welcome to the best club you never wanted to join  -_-  hope you feel better soon.

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    • trents
      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. 
    • trents
      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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