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Confused


KayJay

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KayJay Enthusiast

I am confused about a few things and looking for some answers.

Is Celiac an autoimmune disease? I don't think I actually have celiac just gluten intolerance according to Dr. Fine. I have never had a biopsy but have been gluten-free for 3 years now and doing fine until recently.

I read on here that if you have one autoimmune disease you are at a higher risk of developing more. 4 years ago when I was really sick they did blood test and thought I had Lupus. I know that is a common mistake right?

Well, I have been fine but recently got the flu. I think that triggered something and I have no idea what. I have had zero energy and can't get rid of a low grade fever even with the antibiotics I am on. I went to the doctor and he is testing my thyroid and blood counts but I have little hope of them finding anything. It just took so long to get diagnosed with this I have little faith in Doctors sometimes. (He even had little faith in finding anything) I guess I should mention that I have gained 11 pounds (in the last 7 months!) despite eating right and working out :angry:

Help! I don't know what is going on with me or who to turn to. I have an 18 month old and I feel like I am being a horrible mother to her because I have absolutely no energy to play :(


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wowzer Community Regular

Celiac is an autoimmune disease and so is thyroid. I don't have an official celiac diagnosis. I have been tested for lupus, herpes, all sorts of things. All my tests came out negative. I have had so many extremely itchy rashes and finally when I saw DH a light bulb came on. I went gluten free the beginning of the year and it has helped a lot of my symptoms. I still am missing something, but hopefully I'll figure it out. It sure is frustrating to feel awful. My husband thinks I make these things up. I have a little sister whom was diagnosed with celiac at a year. She has a long list of the autoimmune disorders going. I hope you find your answer soon.

RiceGuy Collaborator

When I first went gluten-free, it took about 6 months to really begin to see some changes. Once that started, I knew I was on the right track. However, like many others, over time other things began creeping up. Thanks to the member on this board, I did finally figure out some of the major ones. So now I take a sublingual methylcobalamin (vitamin B12) supplement, and also a magnesium supplement. It wouldn't surprise me if I find it necessary to supplement other nutrients, but I'm hopeful that won't be the case. I also had to cut out all dairy, though I wasn't eating much of it anyway. Getting more proteins from beans and grains also has helped.

One allergy which did surface was to corn. I think I've narrowed it down to GMO varieties, because organic ones and things like popping corn are still generally ok. I get cold-like symptoms from the ones that bother me. Nightshades also seem to bother me the last I tried any, but I don't consider the reaction to be an allergy. Rather, it's more of an inability on the part of my digestive system to filter out the neurotoxin which they contain. It happens to be toxic to everyone, but most people have a high enough tolerance such that the usual amounts consumed don't create enough of an impact to get noticed.

As for your fever, that I know is supposed to indicate some kind of effort by the immune system to kill off whatever microbial gremlin is bugging the body. I do imagine it's quite possible for a fever to be caused by other things, but I've not researched it. Sometimes though, antibiotics can do more harm than good, and I do know from experience how they can really mess with the body in all sorts of ways. So I'd caution about taking such things, or any drug for that matter.

Some other things which have plagued a number of the members here are canola and MSG. Though I haven't seen fever as being related to MSG, it does cause migraines for many. Apparently it can be in vaccines too. Here's a link to some good Open Original Shared Link for anyone who want to look into it.

I wish I had some definitive answers for you, but hopefully between all the replies and your own research, you'll find the solutions you seek.

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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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