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How Long?


reeetz

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reeetz Rookie

I was just wondering how long it takes to feel normal again. Since starting the gluten free diet (2 weeks ago), my symptoms have improved greatly. But I still don't feel "normal". Some days will be fine but I still have those bad days where I just don't feel right. Did this happen to a lot of people? Am I doing something wrong?


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sandsurfgirl Collaborator

There is a withdrawal period and then your body is healing all that damage. I'm on week 3 and in the past 2 days I've felt normal. I'm still not 100% but I definitely feel more normal than I have in a long time. I think it also has to do with how sick you were at diagnosis. I was very ill, so I don't expect full recovery for awhile.

If you use the search function and put in withdrawals you can find lots of threads about it.

Hang in there. Make sure you aren't using soaps and shampoos and lotions with gluten in them. I resisted that, but when I made that change like 3 days ago I felt much better. The soap and lotion get into your mouth from your hands and the shampoo runs down your face and gets in your mouth. I was using a face lotion full of wheat and I'm sure it got on my lips and then on my food from my hands.

Actually I haven't found a good gluten free shampoo yet so I'm being really super careful to tip my head back and rinse it thoroughly. I need to use salon products and they are full of wheat. I'm looking into Aveda but haven't heard back from the company yet.

Also eat simply. I was trying all the gluten free goodies and my digestive system couldn't handle that yet.

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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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