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Too Many Restrictions - Need Advice


tpain

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tpain Newbie

A few months back I had a biopsy after years of thinking I may have celiac. My biopsy and blood test both came back negative for celiac, but i'm here anyway. I've recently started the gluten free diet and feel very limited to what I can have. I'm trying to do everything perfect from the start, but I have barely any foods left to eat. Right now i'm eating very clean with no dairy.

 

So -

 

If you don't have any villi damage, is there a problem with keeping dairy in the diet?

 

How many of you think anything of the FODMAP food list??

 

Are high quality gluten free products (udi's, Pamela's mixes, etc) advised against to start, or are they okay from day 1?

 

Do people with non-celiac gluten sensitivities seem to recover faster? How long is a general guideline for this without celiac/antibodies?

 

I've also read things about corn, soy, bananas, etc. It seems like there is nothing left.

 

I'm also trying to juggle an alcat test I had done into the mix, so that is also limiting things. I feel like since I don't have celiac disease I may do fine on a lot of the things I'm cutting out. I feel so limited I'm almost at the point of just water fasting for a few weeks.. frustrated :(


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LauraTX Rising Star

You certainly do not need to do a water fast.  That will land you in the hospital.  Generally, people who have problems with dairy are the ones with severe villi damage.  If all you are wanting to do is start a gluten-free diet, I would not exclude dairy unless you start to suspect it is giving you problems.   I think I am lacking information on why you are thinking of excluding many other food groups.  If you are going to eliminate gluten, do that first, and see how you feel.  After that if you want to see how other things eliminated affect you, do them one by one.  

 

The easiest way to start eating gluten-free is to eat foods that are naturally gluten-free.  Meat, veggies, fruit, etc.  If you are having severe gastrointestinal symptoms you may want to avoid processed food for a while until you start to feel better, then slowly add them in.  If you think dairy may be a problem for you now, you can leave it out and add it in later.  What you want to avoid doing is eliminating too many things at once, then if you improve you don't know which food item was the one causing problems.

 

If you are up to giving us a little more information on what your symptoms are and what specific tests you had done, and if you were eating gluten at the time of the tests, we will be able to help you more.  Also if you can check out the "Newbie 101" thread under the "Celiac Disease- Coping with" subforum.  I hope we are able to help :)

eers03 Explorer

If you are not experiencing flattening of the villi, I don't think there is a reason to stay away from dairy.

w8in4dave Community Regular

Like stated from LauraTX, start out with fresh foods. Don't jump on a bunch of Gluten Free stuff. keep with the fresh stuff. Keep with the milk products and corn products. If you still have a problem cut out the milk products. If you still have problems cut out the Corn. it really is a process of elimination. And honestly I have heard that even tho your biopsy came out negative doesn't mean you don't have Villi damage, they just missed it is all. So you may. Don't think you don't have anything to eat. You have all the fresh stuff to eat! learn to read every label. It's not as bad as it seems at 1st. I havn't been doing it a year yet and I am getting so much better! I have learned to eat alot better. lost alot of weight. Good luck! There are alot of people here that have been doing this diet for years! So they know what they are talking about. And the Newbie Thread is great!!  Good Luck! Hope to read how well you are doing soon!

notme Experienced

i am confused as to why you are starting a gluten-free diet.  what sort of issues are you having?  and what tests (besides celiac) have been done and what were the results? 

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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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