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So What Is Going On?
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15 posts in this topic

I have several additional intolerances besides gluten. And I keep reading here about folks who have been gluten-free for years and a now developing new intolerances.

 

I don't think they have figured it out yet, but there must be something else going on with our immune systems. It's not that we're not healed yet. If you've been gluten-free for years and aren't getting CC'd you are probably as healed as you're going to get.

 

Is it the food we're eating? I don't think so. Some of us eat nothing but organic whole foods. I'm just wondering if celiac disease itself is just a symptom of some greater immune problem.

 

Guess I've got too much time on my hands. If doctors and scientists haven't figured it out I'm sure I can't. But I can't help but wonder if one day they will discover a disease that encompasses celiac plus all other intolerances.

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Interesting thought Bartfull,

I have had similar thoughts. It does seem like things just don't add up too much of the time. But then I meet some Celiacs that seem totally fine on a just gluten free diet. They aren't careful about anything else, but some of us are much more careful and still having trouble.

 

It's so confusing! Research is constantly changing, I wonder how much of what we think we know will be totally different in a few years?

 

Keep hanging in there. :)

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So confusing is an understatement!! Man alive!! Try to be so good then Boom! Something gives you a problem! I wonder if stress affects us? You know we are all under some sort of stress during the holidays. Maby stress has Gluten in it? :) 

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Hi Bartfull. Same problem as you. Diagnosed 5 years ago but gluten-free diet did not do much except let the doctors tick a box every year as my blood tests came back fine. But actually a different story. Increasing intolerances. UK NHS will not test for intolerances. Had to go privately. Showed I was intolerant to all dairy, eggs and a lot of other foods. Doctors refused to accept results. Told by last doctor 6 weeks ago to "learn to live with it"!! Red rag to a bull. So I went private and started reading up on internet - this site as well. What I read here was confirmed by my specialist (a doctor who is also a Coeliac). celiac disease is only part of the story. Commercial gluten-free products are, on the whole, not good for you due to the processing - just look at the ingredients. Acute lack of energy, weight loss, mood swings etc have been caused by leaking gut (another problem UK NHS refuses to acknowledge). I have been put on a GAPS diet for the next year or so as hair and urine tests (which I also had to pay for) showed a general lack of minerals and some toxic elements in my body. GAPS is a newer version of SCD (Specific Carbohydrate Diet). Google it

 

I know I am in for an uncomfortable 12 months but as it appears I have suffered from this most of my life (another research study I have read), at 64 it is about time I fixed it! Best of luck but please remember that only a small fraction of celiac disease sufferers have their gut completely healed by a gluten-free diet - some are made worse by it (although it IS essential, but keep off processed commercial gluten-free foods).

 

gluten-free + GAPS diet I am not looking forward to!

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I believe it is from cc at less than the 5 ppm test detection limit.  I want them to come up with some more sensitive tests and start testing more things.  I think that would be revealing and allow us to make some more safe decisions with our food choices.

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Dr. Fassano's research on gut permeability indicted that some people with celiac have abnormal permeability due to an issue with reaction to a control chemical called zonulin.  That issue is often called leaky gut.  That may not change with a gluten-free diet.  Least that's how I understand it.  So that would mean there is always a possibilty of new food intolerances developing.  That being said, I haven't developed any new ones since my system settled down.

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Hi Bartfull. Same problem as you. Diagnosed 5 years ago but gluten-free diet did not do much except let the doctors tick a box every year as my blood tests came back fine. But actually a different story. Increasing intolerances. UK NHS will not test for intolerances. Had to go privately. Showed I was intolerant to all dairy, eggs and a lot of other foods. Doctors refused to accept results. Told by last doctor 6 weeks ago to "learn to live with it"!! Red rag to a bull. So I went private and started reading up on internet - this site as well. What I read here was confirmed by my specialist (a doctor who is also a Coeliac). celiac disease is only part of the story. Commercial gluten-free products are, on the whole, not good for you due to the processing - just look at the ingredients. Acute lack of energy, weight loss, mood swings etc have been caused by leaking gut (another problem UK NHS refuses to acknowledge). I have been put on a GAPS diet for the next year or so as hair and urine tests (which I also had to pay for) showed a general lack of minerals and some toxic elements in my body. GAPS is a newer version of SCD (Specific Carbohydrate Diet). Google it

 

I know I am in for an uncomfortable 12 months but as it appears I have suffered from this most of my life (another research study I have read), at 64 it is about time I fixed it! Best of luck but please remember that only a small fraction of celiac disease sufferers have their gut completely healed by a gluten-free diet - some are made worse by it (although it IS essential, but keep off processed commercial gluten-free foods).

 

gluten-free + GAPS diet I am not looking forward to!

I challenge your statement that all gluten free processed foods are to be avoided because they too processed.  I don't know what you are looking at but here in the States, the ones I do consume have very few ingredients and no chemicals and other nasties that are commonly found in mainstream gluten filled processed foods.  Not all processed foods are created equal.

 

A few things so you have a bit of my background......I was diagnosed at age 46, after 30 years of intense gastro symptoms. I was 94 pounds and had no working villi.  I came very close to dying.  I am also extremely sensitive to minute amounts of gluten so am very strict with my diet.  It does include some processed foods. Fast forward 8 1/2 years and I am doing really well. Dairy is also a problem that I have never gotten completely back. I am dairy lite.

 

It is always tougher to heal when you are older and that has nothing to do with the gluten free diet. It's a fact of life. I don't like it but at 54 years old, it is what it is. What also comes into play is what your diet looked like pre-diagnosis. If you spent a lifetime eating crappy foods before diagnosis, then healing will be more difficult after diagnosis. I am not saying you did but that is a factor in healing for many. 

 

Forget about what the NHS does to you because that is a problem the world over. Many doctors are clueless on nutritional issues so it's up to you to learn all this and base what you do on knowledge.  It's what I have done and it worked very well for me.  I have spent thousands of dollars on testing and other medical issues but by paying cash at a private doctor, you tend to get better results.  You get what you pay for. The same thing is happening here in the States now that government are sticking their noses into medicine. Health from a chronic problem will be up to you, with some input and guidance from a good doctor that you may have to pay for.  It's worth it.

 

Most Celiacs DO HEAL WELL on the gluten-free diet but many have other intolerances that they have to deal with. The ones that heal well are just out there living their lives and aren't on forums so you do not hear of them. But this whole notion that you cannot heal except on an insanely restrictive diet is definitley not true for everyone. It's another Celiac myth.  What also helps is a good attiude towards the food you will now be eating.  I am seeing a lot of negative in your post and, while that is understandable when you are not feeling your best, it won't help you adjust or heal well. The older you are, the harder it can be to adjust to a healthier way of eating.  The gluten-free diet is not different food, it's healthier food. You have to embrace it and be in better place mentally because if you don't, the body will not follow.  I was totally trashed at diagnosis but now am working full time, go to the gym twice a week for hard work-outs and feel pretty good. Oh...I also have a total of 4 autoimmunes diseases, from going so long with undiagnosed Celiac but I do not let them win.  If I can heal well enough for health to return with all that inflammation going on, anyone can. 

 

Make sure you get blood testing done for your deficiencies and do not rely on quacky testing. Do not wallow in the false belief that only a small fraction of celiacs recover well on the gluten-free diet.  It really is nonsense and won't get you results if you accept defeat before you even begin.  I wish you all the best for a healthier future!

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please remember that only a small fraction of celiac disease sufferers have their gut completely healed by a gluten-free diet - some are made worse by it 

 

 

I am not sure this is entirely true, fergusminto.

Maybe some folks do not completely heal, but incidences of refractory sprue are in the minority, not the majority.

And I do not know that a gluten free diet has made anyone "'worse".

 

" However, refractory sprue is just that: refractory or stubbornly resistant to treatment. Only a small percentage of the people with celiac sprue will develop RS, and these patients are almost invariably 30 years of age or older. However, as yet, it is impossible to predict which patient of those with celiac sprue will develop RS."

 

http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1161/viewAbstract

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I get feelings like I was glutened once in a while but I chalk it up to an "autoimmune flare-up" of some sort.  I'll get tired, hair falls out, stomach acts up and I get pain... It seems to be linked to stress and getting ill.  It's acting up on me now, darn it.  

 

I do have a tough time with some foods but I don't know if it's worse than the typical person. Pears and apples give me stomach aches and bloating and too much greens do the same... Sometimes I wonder if fruit and vegetables are worth it.  LOL And I'm one of those organic people who has a ridiculous food bill too.

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I get feelings like I was glutened once in a while but I chalk it up to an "autoimmune flare-up" of some sort.  I'll get tired, hair falls out, stomach acts up and I get pain... It seems to be linked to stress and getting ill.  It's acting up on me now, darn it.  

 

 

 

These are the exact glutening symptoms I get, Nicole..... especially the hair loss, pain and flagging fatigue.

You are probably having an "AI flare up" for some reason, hon.

Not sure how/why you may be suffering a gluten trace hit, but please consider the possibility? It does not just happen without cause.

This happened to me recently--slowly over a few weeks--and it wasn't until I had full hair loss and a feeling of fatigue so bad I felt like I was drugged that I realized a little place I "thought" was taking precautions for food prep was making several mistakes. It cost me dearly.

 

Stress exacerbates symptoms, but does not cause them.

Just suggesting some thoughts to you. IH xx

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These are the exact glutening symptoms I get, Nicole..... especially the hair loss, pain and flagging fatigue.

You are probably having an "AI flare up" for some reason, hon.

Not sure how/why you may be suffering a gluten trace hit, but please consider the possibility? It does not just happen without cause.

This happened to me recently--slowly over a few weeks--and it wasn't until I had full hair loss and a feeling of fatigue so bad I felt like I was drugged that I realized a little place I "thought" was taking precautions for food prep was making several mistakes. It cost me dearly.

 

Stress exacerbates symptoms, but does not cause them.

Just suggesting some thoughts to you. IH xx

 

Thanks IH, you are a sweetie.  :wub:

 

Yep, I think I'm having an AI flare-up but with thyroiditis and ITP, well that's two other active AI disorders so I'm not too worried it was gluten. I haven't eaten out in months, and the only new foods I've been eating is some Hershey kisses - this started before that too. I suppose it is possible it is gluten, but I'm not sure how.

 

I don't know about the stress thing. It does seem to set symptoms off for me. Xmas is a busy time, hubby and two of my boys have had birthday parties, I just had a cold (or part of a flare-up... whichever), and hubby lost his job. Stress may not cause celiac disease symptoms but I think it could with other AI diseases.... just guessing though.

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Thanks IH, you are a sweetie.  :wub:

 

Yep, I think I'm having an AI flare-up but with thyroiditis and ITP, well that's two other active AI disorders so I'm not too worried it was gluten. I haven't eaten out in months, and the only new foods I've been eating is some Hershey kisses - this started before that too. I suppose it is possible it is gluten, but I'm not sure how.

 

I don't know about the stress thing. It does seem to set symptoms off for me. Xmas is a busy time, hubby and two of my boys have had birthday parties, I just had a cold (or part of a flare-up... whichever), and hubby lost his job. Stress may not cause celiac disease symptoms but I think it could with other AI diseases.... just guessing though.

 

Well, we all know stress produces inflammatory cytokines in the body. So, this would ? possibly? induce symptoms or certainly exacerbate them for sure!

 

I  am sure you know more about how it may affect your own body than I do, and I did not mean to imply it was not a factor (sorry if that

came across that way!)  I know that my sleep is  affected if I am under prolonged stress. And it does no favors for my muscles.

(all that shoulder hunching and all) In any case, I was just throwing out some thoughts. (feel free to always throw them back!) lol

 

Terribly sorry to hear about your hub's job situation, hon. :( This is the third time this week I have heard this about someone and I sincerely

hope something resolves for you guys as soon as possible. xx

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Wow I said something about Stress having Gluten in it , It was kinda a joke! But now you guys are talking about this.. inflammatory cytokines .... Very interesting!! I am going to really read up on it. Thanks for all the info. You all Rock!! Wow!! 

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Well, we all know stress produces inflammatory cytokines in the body. So, this would ? possibly? induce symptoms or certainly exacerbate them for sure!

 

I  am sure you know more about how it may affect your own body than I do, and I did not mean to imply it was not a factor (sorry if that

came across that way!)  I know that my sleep is  affected if I am under prolonged stress. And it does no favors for my muscles.

(all that shoulder hunching and all) In any case, I was just throwing out some thoughts. (feel free to always throw them back!) lol

 

Terribly sorry to hear about your hub's job situation, hon. :( This is the third time this week I have heard this about someone and I sincerely

hope something resolves for you guys as soon as possible. xx

 

No, no. Nothing implied.  I know you only mean the best but my responses aren't coming out as well as I mean them. KWIM?  LOL ;)

 

Who knows what it is. If it only lasts a week then maybe it is a muscle or gluten thing. If it settles in for a few months like it used to, then I'll know it's just my body misbehaving again.

 

And thanks.  Hopefully Hubby will find something early in the new year. :)

 

Frieze - I think my D is okay. It used to be in the lower normal range a year ago but I have since quintupled my D intake so it should (theoretically) be better.... Then again, this IS Canada. LOL

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