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Help Me Please!


shacon-bacon

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shacon-bacon Apprentice

Ugh I need opinions!!

Apparently I have a b12 deficiency which was discovered after some numbness/tingling in my arms and feet...Ok. So, started taking b12 vitamins and also one a days...yah...have been VERY careful about what I've been eating...for the past 3 weeks I've had weird, celiac sounding but not quite feeling symptoms....literally, EVERY time I eat, no matter WHAT I eat, diarrhea (sorry...true)...once I go, I'm better...but its seriously 3 minutes after I finish a meal, I go, I'm better...besides that, I have had ZERO energy...like literally, sleeping 14 hours on the weekends, spending days in bed, on the couch, zero energy to get up, falling asleep at my desk at work..obviously, no energy b/c I have no food staying in my body!!

But, I haven't eaten ANYTHING bad that I'm aware of and normal celiac symptoms for me go away in about 3 days and this has been 3 weeks...Please...has anyone experienced anything like this or have any ideas? I've been to 4 diff docs (for the b12 symptoms) in the past 2 months and am simply tired of seeing doctors who tell me to take a xanax and move on!!!

I'm sad :( I'm hurting and I need help! Anyone?


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GFinDC Veteran

Have you confirmed that the vitamin pills are gluten-free? Sometimes they put wheat grass or oat grass in them. It is probably something you are consuming every day that is affecting you. So check everything and if you can't figure it out, start eliminating things.

There is also the possibility of additional food intolerances developing over time. Like any of the top 8 including soy, dairy, etc.

Skylark Collaborator

Sounds terrible. I bet it's the vitamins.

From oneaday.com:

Q. How much gluten does this contain?

A. We do not add any gluten to our products. However, we cannot guarantee that all raw materials are 100% gluten-free.

One-A-Day vitamins are junk anyway. They mostly go straight through you because the vitamins are the cheapest sort possible that are poorly bioavailable. May I suggest you buy a good brand like Solgar that will confirm the gluten-free status of their products?

shacon-bacon Apprentice

Thanks I have switched to a brand that says specifically "gluten free"...I have also eliminated just about everything from my diet except fresh fruit and veg juice, cottage cheese, and gluten free soups...I feel like I need to heal...I'll give it a few days and slowly add more things back in...

Tina B Apprentice

Sounds terrible. I bet it's the vitamins.

From oneaday.com:

Q. How much gluten does this contain?

A. We do not add any gluten to our products. However, we cannot guarantee that all raw materials are 100% gluten-free.

One-A-Day vitamins are junk anyway. They mostly go straight through you because the vitamins are the cheapest sort possible that are poorly bioavailable. May I suggest you buy a good brand like Solgar that will confirm the gluten-free status of their products?

NatureMade brand are all gluten free.

Skylark Collaborator

NatureMade brand are all gluten free.

I specifically suggested Solgar because they're Albion Gold Medallion. You know what's in the pill. Not so much with a lot of other brands. Nature Made is a particularly worrisome brand.

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LDJofDenver Apprentice

Thanks I have switched to a brand that says specifically "gluten free"...I have also eliminated just about everything from my diet except fresh fruit and veg juice, cottage cheese, and gluten free soups...I feel like I need to heal...I'll give it a few days and slowly add more things back in...

Have you confirmed the vegetable juice to be gluten free?

And, soups. What soups? Many Progresso soups that were gluten free last year are no longer safe. And the Health Valley Organic soups - if any list "natural flavors" the company says celiacs should avoid all those.

How about spices? Gluten can often show up in spices as well.

Many celiacs have trouble with dairy (cottage cheese!). A lot of folks on this forum, and some nutritionists, advise that you eliminate any dairy for the first year of your gluten free diet. If you've verified everything else, and are sure you're not getting cross contaminated (using old or shared toaster?), perhaps eliminate cottage for a few days and see if that changes anything.


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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
      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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