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I Keep Developing Food Intolerances!?
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Hi all,

I could really use some advice here. I am very frustrated and to the point of not wanting to eat ANYTHING.

I figured out I am at the very least highly gluten intolerant, I believe I have celiac disease. Since I found this out I have also discovered a severe soy and caeisin intolerance. If this wasn't frustrating enough, since I've cut these three culprits out of my diet I keep developing other sensitivities. I have been gluten low for about 1 1/2 years, but I only recently decided I could have celiac and went strictly GFCFSF.

Intolerances include: caeisin, soy, peanuts, coffee, citrus fruit, tomatoes, potatoes, broccoli, and cauliflower, most beans. I am beginning to suspect corn, quinoa, and eggs.

My primary care physician doesn't believe I have celiac disease, she tells me I have a "sensitive system." She helped me get my severe Vitamin D and B12 deficency under control, but told me I was fine after that. I tried to reintroduce gluten to get tested by another doctor but was violently ill. I also have acid reflux and burning or discomfort after every meal even on a gluten-free diet.

Basically, how do I stop this!? Will this get better on a gluten-free,CF,SF diet? I have been looking into the Specific Carbohydrate Diet as well as a rotational diet but I don't know if I am just not being patient enough with my gut? Will this get better without more drastic dietary change?

Sorry for the long post, I am just very frustrated and honestly, lonely. No help from anyone in the medical field is SO FRUSTRATING.

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I feel for you. I am diagnosed with celiac disease and have a lot of damage in my system. I've found that I also have a lot of food intolerances and have not healed by just being gluten free (I've been gluten free over 13 months now). Based on advice from this forum I did try specific carbohydrate diet and have been doing that for several months now. It does seem to be helping although I do get tired of the limitations of the diet and am afraid I may be on the diet forever. Or maybe I'm just not very patient. Having food issues is very frustrating and I haven't got much help from the medical community.

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I hear ya! I certainly have felt like that some days myself. The day that nearly takes the cake was the day after I had just baked some beautiful and delicious gluten-free sugar cookies, I realize that one of my sensitivities is sulfites, of which corn starch is sulfited, which was in the baking powder I used to make the cookies. I think I still have a few of them in the freezer, just in case I can eat them some day.

In some cases, it may not be ALL tomatoes, for instance, but you need to try vine-ripened tomatoes (since the others are likely gassed), or that organic will work. I did have to give up coffee for the most part, as a daily beverage. It will get better, as you heal. And keeping a food diary, noting brands of things you try should help. It does take some detective work, but it's do-able. Hang in there!

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I am thinking that your body is developing new intolerances perhaps, but now it can tell you what is bothering it. There are many foods to try. I think I get a more varied diet with each thing I rule out. Your body may still be in transition. I know I can't tell withdrawl symptoms, from reactions, from ?

I am thinking with time you will be able to sort these things on. Hang on for the ride.

Diana

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Hi all,

I could really use some advice here. I am very frustrated and to the point of not wanting to eat ANYTHING.

I figured out I am at the very least highly gluten intolerant, I believe I have celiac disease. Since I found this out I have also discovered a severe soy and caeisin intolerance. If this wasn't frustrating enough, since I've cut these three culprits out of my diet I keep developing other sensitivities. I have been gluten low for about 1 1/2 years, but I only recently decided I could have celiac and went strictly GFCFSF.

Intolerances include: caeisin, soy, peanuts, coffee, citrus fruit, tomatoes, potatoes, broccoli, and cauliflower, most beans. I am beginning to suspect corn, quinoa, and eggs.

My primary care physician doesn't believe I have celiac disease, she tells me I have a "sensitive system." She helped me get my severe Vitamin D and B12 deficency under control, but told me I was fine after that. I tried to reintroduce gluten to get tested by another doctor but was violently ill. I also have acid reflux and burning or discomfort after every meal even on a gluten-free diet.

Basically, how do I stop this!? Will this get better on a gluten-free,CF,SF diet? I have been looking into the Specific Carbohydrate Diet as well as a rotational diet but I don't know if I am just not being patient enough with my gut? Will this get better without more drastic dietary change?

Sorry for the long post, I am just very frustrated and honestly, lonely. No help from anyone in the medical field is SO FRUSTRATING.

I am not sure you want to hear this but,

I took me going gluten,soy,egg,legume,nut,corn, nightshade, grain (except rice) and dairy free for six months to get my gut to heal enough to even start adding foods back. I also had to eliminate and/or limit certain fruits and veggies. I could not ( and still can not ) tolerate most meats. The foods I could eat I had to rotate .

I had leaky gut and at one point I would have swore ( and did , alot, along with a lot of crying and screaming :ph34r: ) that there was not a single food my body could tolerate.

Most , not all but most , of these food I have now been able to add back in to my diet.

Some ( gluten and soy ) will NEVER be part of my diet .

Some ,like nightshades, I still have to rotate.

But over all much better now :D

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I'm sorry you are feeling so bad. My first year was much the same. I just want to say that if you really are Celiac and you have not been strictly gluten free and watching cross contamination then your system has not had much chance to heal at all. Give gluten free a good strict try including cross contamination.

Secondary intolerances are very common. My first year I went through eliminating gluten, then dairy, then soy, salicylates, nightshades, citrus, you name it, I tried eliminating it. What really helped was paying strict attention to gluten CC and eventually I got everything back but Soy (still strictly free of soy)and Salicylates (which are cumulative). I have to watch them, but I can eat some. It is very frustrating I know. I didn't want to eat at all for a while too. But the gut cannot begin to properly heal until you have really and truly eliminated gluten. You may be surprised at the foods you will be able to tolerate later. You know your body better than your Dr. does. If you believe you are Celiac/Gluten Intolerant then be very serious about it so your body can heal itself. Welcome to the forum!

I almost forgot, I cannot eat legumes at all. Very like gluten in my system. But that elimination has not bothered me in the least. You may have to do the elimination thing for a while to get some healing.

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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