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It's One Of Those Days/weeks/months :(


AJ Leigh

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AJ Leigh Rookie

I really don't want to be a baby and whine, but sometimes it's just so hard to cope. I swear no matter what I eat it makes me sick. It could be the mildest, most friendly thing for the stomach and I end up with bloating, gas, and terrible acid indigestion. I just don't know what to do at this point. It's not a matter of "will it make me sick?" it's "how sick is it going to make me?" I've had pretty much every test under the face of the sun, from endoscopy to colonoscopy to a billion different types of blood work, and everything is normal. In fact the doctors say aside from me being constantly ill, I am the healthiest person they've ever seen.

I'm running pretty low on hope here. I don't know how much longer I can deal with day after day of joint pain, fatigue, and headaches. I've been on a very dedicated gluten free diet for just under a year and yet I still feel terrible. I just found out I am more than likely intolerant to soy, which I've also cut out of my diet, yet I still feel like dirt. What can I do :(?


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Jestgar Rising Star

fuss.

whine.

post.

and then figure out how you will handle it.

Looks like you're doing it right. :)

Marilyn R Community Regular

Take a long soak in the bath (adding epsoms salts and baking soda is good.) I like about a cup of salts and about 1 1/2 cups of baking soda in really hot water. And then get your mind around eliminating dairy for awhile, and what you can do with that. (It's not that hard.) There's still so many really good things to eat!

AJ Leigh Rookie

Thanks for your reply guys :). I've actually been mostly dairy free for a long time. The puzzling thing is when I had my colonoscopy/endoscopy thing the doctor said he could tell I was "severely lactose intolerant". I hardly ever eat dairy and when I do it's in small amounts with a lot of lactaid supplements. I guess I have to quit it altogether since my stomach is so damaged :|.

Bubba's Mom Enthusiast

If you are suspicious of soy, be careful. It's in even more things than gluten!

I got to where I am reacting to soy more and more.

I found it used in supplements..especially as the source for vitamin E. Look out for tocopherol...can be soy or wheat derived.

I've been getting nauseated after taking my calcium supplement. I was told to take calcium with vitamin D for better absorption. I looked up the source for the D in the capsule and found ergocalciferol as the source. A quick search online said it comes from soy! It's everywhere I tell ya!

Other supplements to check include fish oil, vitamin d or D3, multivitamins, CoQ10, calcium with magnesium and/or zinc (soy polysaccharide).

I hope you can figure out what's getting you and get back on the road to healthy.

AJ Leigh Rookie

I'm beginning to think soy is a bigger problem for me than gluten!

I've got to check every med I take now for soy, which will be a pain! I'm worried about my vitamins :((.

Thanks for responding!

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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.
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    • 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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