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All Grains A Problem For Any?


oceangirl

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oceangirl Collaborator

Hi All,

Are there others here who seem to do better when all grains are eliminated? I am giving the Paleo diet a try for a month after this last 2 horrible weeks. I've taken out anything processed, of which there wasn't much but I had been trying a few new things. I am gluten intolerant, positive bloodwork(tTg), negative endoscopy (after 3 months gluten-free), positive fecal Enterolab (gliadin), two gluten intolerant genes (DQ 1,1) Enterolab. Thank you for any perspectives on this.

lisa


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Ursa Major Collaborator

Yes, I am intolerant to all grains including rice and corn. You might want to check out my lectin link in my signature. I also can't tolerate any starch, really. I use light buckwheat flour once in a while, but have to limit that to about once a month, as even that will cause bloating and gas. But I have to have a baked treat once in a while!

tummytroubles Newbie

Right now the only grain I can eat is non-starchy rice. I'm still having some stomach pain and other problems, so I'm still in the process of eliminating items. The rice may end up being the culprit. Although it could be eggs or potatoes. I've already eliminated so many things, but the list of foods that I can eat just keeps getting smaller and smaller. The good part about it though is that I'm feeling so much better than before!

oceangirl Collaborator
Right now the only grain I can eat is non-starchy rice. I'm still having some stomach pain and other problems, so I'm still in the process of eliminating items. The rice may end up being the culprit. Although it could be eggs or potatoes. I've already eliminated so many things, but the list of foods that I can eat just keeps getting smaller and smaller. The good part about it though is that I'm feeling so much better than before!

Thank you both so much for your responses. Ursula, yes, I have researched lectins and currently don't eat many if any. But losing tomatos is definitely a hardship- although not if they make me sick!

Thank you again!

lisa

jerseyangel Proficient

Hi Lisa,

I am intolerant to most lectins, also. I can eat potatoes though, and after being off all grains for about 6 months, I can eat a serving of rice now and then.

During the 6 months I was off grains, I ate meats, fruits, veggies, almonds, potatoes and drank only spring water. I guess that's close to the Paleo Diet, although I didn't follow any particular diet.

I think taking out processed foods is a good idea for you for now. ;)

I understand how frustrating this is--I did well on the gluten-free diet for about 5 months--then felt horrible again. I figured out my intolerances by doing an elimination diet, suggested by my allergist.

I wanted to let my system heal as much as possible, and at this point (19 months gluten-free), I feel better than I've felt for a long time. I have a pretty limited diet, but it's worth it to me to feel so much better. I avoid: dairy, soy, legumes, coconut, corn, most grains, and tapioca. As limited as that sounds, I eat very well :)

Sorry you've been struggling with this--best of luck with everything.

oceangirl Collaborator
Hi Lisa,

I am intolerant to most lectins, also. I can eat potatoes though, and after being off all grains for about 6 months, I can eat a serving of rice now and then.

During the 6 months I was off grains, I ate meats, fruits, veggies, almonds, potatoes and drank only spring water. I guess that's close to the Paleo Diet, although I didn't follow any particular diet.

I think taking out processed foods is a good idea for you for now. ;)

I understand how frustrating this is--I did well on the gluten-free diet for about 5 months--then felt horrible again. I figured out my intolerances by doing an elimination diet, suggested by my allergist.

I wanted to let my system heal as much as possible, and at this point (19 months gluten-free), I feel better than I've felt for a long time. I have a pretty limited diet, but it's worth it to me to feel so much better. I avoid: dairy, soy, legumes, coconut, corn, most grains, and tapioca. As limited as that sounds, I eat very well :)

Sorry you've been struggling with this--best of luck with everything.

Patti,

Thank you for all your thoughts. It is, well, I shouldn't say "encouraging" because I don't want anyone to feel bad as well, but, "helpful", perhaps, to know that I am not the only one who can be beautifully cured by just removing gluten. I've had troubles digesting most of my life (was diagnosed I think wrongly with colitis when I was 11) but had such a marked improvement after 9 months gluten-free that this downward trend feels very disillusioning. Also, since family and friends sometimes seem to question how I'm surviving on what I CAN eat, I often wonder if people who are a ways into this continue to have issues with foods. I don't eat MOST lectins (really want tomatos, though) and if I have too much roughage (in fruits and veggies) have IBS symptoms! So I have a narrow range right now. I AM still eating some processed rice in the AM but that is it for now. I think I live on bananas, meat and fish and summer squash! Right now after this last really apparent glutening (the symptoms are fairly clear), I'm not tolerating things too well so I'm sticking to my few "knowns". Now I've gone on and on...

Thank you so much for writing back!

Best of health to YOU~

lisa

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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. 
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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
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