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Dangerkitten

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Dangerkitten Newbie
Dangerkitten
Posted

Hi,

I'm new here and decided it's time to post. I've been lurking and reading for a few months now.

I have multiple forms of arthritis, fibromyalgia, multiple chemical sensitivity, severe fibroid issues which has had me anemic for the past couple of years (so I'm on perscription iron supplementation). I also have restless leg syndrome (take Carnitore for that and Ultram when it's bad). I have healing issues because of the autoimmune problems so I fear surgery greatly. Generally, I've been a pretty sick puppy for the past 25+ years.

A little over three months ago I read a book called "The Inflammation Syndrome" which led me to cut wheat out of my diet. Some searching on the net brought me to this site and I decided to go gluten free just to see if it helped. Realizing that I've had explosive diarreah for most of my life, with rashes on my hands since childhood I decided to bring up gluten intollerance to my rheumatologist. She had such a look of shock on her face and said, "Why haven't we tested you for this?" Unfortunately, before I was tested, I cut out all gluten 2 months before, which seems to have skewed some of the celiac panel. But one of the test showed I had quite a bit of gluten antibodies still circulating my system. She concluded that I should remain on the diet and further testing was unneccesary.

One month after starting the diet, most of my pain went away. My RLS disapeared. The horrible intestinal cramping and explosions ceased ...gone! Now that it's been a full 3 months without any pain I started to feel pretty confident that I could keep this thing controlled. Well.....Until I had dinner at my sister-in-laws on Easter. Sigh....I don't know what had gluten in it. I tried so hard to be vigilant; without success. I got home and steadilly declined. The explosive "D" returned for hours. The next day I slept 16hours and had to take Ultram every 5 hours just to control the pain. Used my heating pad on my legs just so I could stand it till I got unconscious. It's calming down again, but I swear, I'm not going to take any chances on food anymore. After 3 months of peace in my life, returning to gluten hell was very unwelcome.

I'm still in shock that all these years gluten was my problem. My general practitioner now thinks the arthritis is secondary to the celiac. I'm starting to wonder about that myself.

Anyway, thanks for this board. You helped me to figure things out and go ahead with the diet on a hunch.

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doordb Newbie
doordb
Posted

[i too have just become a member. I have been sick for also 25+ years maybe even double that and just didn't know it. I have been gluten free since Nov 2004 or at least tried to be. I have now eaten something wrong twice and could not believe the reaction of what I thought used to be normal...

KaitiUSA Enthusiast
KaitiUSA
Posted

Welcome to the board both of you :D

This is a great place for support and to ask any questions B)

Look forward to talking with both of you :D

Canadian Karen Community Regular
Canadian Karen
Posted

Hi and welcome to both of you!! :D

There are a bunch of really great people on this board who are always willing to answer any questions you might have. Our motto here is "No question is too stupid to ask....." We've all been there...

Glad you found us! ;)

Karen

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    • trents
      Bob red mill gluten free oats

      By trents · Posted

      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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      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
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      By jenniber · Posted

      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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      By trents · Posted

      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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