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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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    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
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