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It Was Supposed To Be Over At Gluten Free! Help :(
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Also, uhm.. No one's heard of IgG food intolerance testing? I know it's somewhat controversal, and that elimination diets are typically what people do to try to figrie stuff out but I've already eliminated SO much and it still seems I react to absolutely everything I eat.

 

I feel like I'm drowning.

I've been on this paleo diet for 5 months and I feel worse and worse everyday. I don't know how much more I can take of this.. My stomach is stretched out so far it literally hurts to breathe!! I don't care what it is I'll have to do as long as I can get better. No one's been able to help me. My old GI doctor went as far as saying that it's IBS and I'll probably just feel like this forever. Granted, she also originally doubted I had Celiac Disease (before I got the biopsy and bloodwork) soley because diarrhea wasn't one of my symptoms... -__-

I don't know how much more of this I can take. THis whole thing has taken over me entirely. I'm not myself at all anymore. I don't care about any of the things I used to care about. I rarely even leave me house. I'm in constant agony 24/7...sometimes I"ll spend entire days crying... I feel like I'm being punished in a way. I was never really a happy person and now I realize how much I should have appreciated my life while I still had one.

I'm afraid I'll have to live like this forever. After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else.

Sorry for whining like this lol I know some of you don't really wanna hear it. I know my parents and my boyfriend are tired of hearing it. All I talk about it Celiac Disease and trying to find out what's wrong. I tried the FODMAP diet, the SCD diet, I once even did 2 weeks of eating nothing but homemade soup, gelatin, and baby food veggie purrees. Nothing helps at all. I never get a chance to breathe.

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my main symptom is constipation, not diarrhea.

 

You have this in common with me. I know a lot about dealing with constipation so let me know if I can help with that at all. If you are not going enough, that will cause you to feel terrible, trust me, and it can definitely cause the bloating. One thing I will mention is that it's important to get the right balance of fiber. Insoluble fiber speeds up digestion and soluble fiber slows it down. For the most part insoluble fiber is the outer layer of foods, like the skin on an apple, and soluble fiber is what's inside, like the white part of the apple. There are some exceptions. It's crucial to get enough insoluble fiber. Green Beans, peas, and artichokes are some good sources.

 

Food Intolerance testing is controversial and I don't know much about it but there are people who have used it on this site, and others who don't believe in it, if you want to post a separate topic about to get more responses.

 

You WON'T feel like this forever. GI's are generally disappointing. There's A Lot they don't know and they are not open to new concepts. A Naturopathic Doctor (ND) can be helpful thinking outside the box, and GI's won't help much with diet, strange as that is. GI's are pretty clueless about things outside of tests, prescriptions and surgery.Your GI sounds quite unhelpful and discouraging, I would seriously find a different one.

 

You're right though, there has to be something that is still off if you're feeling that bad. When you figure it out you will feel better. The way you're feeling now is not permanent, but it is something that needs attention right away. You need relief.

 

I'm really wondering about the constipation issue. If you are having trouble with that and want to discuss it more thoroughly you can PM me. I've learned a lot about it, and not going enough will make your life feel like hell. It can cause severe psychological symptoms as well as physical ones when it gets bad enough.

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I have done the IgG food intolerance testing and felt it was a real help to me. It tests the blood for antibodies to foods that you are eating.  You must be eating the foods to be a valid test.  I also have used a rotational diet to help find foods I don't tolerate.  You might try new meats and new vegetables, that you hadn't eaten over the years that you were ill.  These you shouldn't have antibodies too.

 

Please don't give up.  The process can be complicated, but it does get easier as one peels off layers of illness.  You are traveling up hill, but even when you don't see through the fog, when you are going up, you will get somewhere.

 

Feel free to Pm me if you want to discuss the tests further.  Natural practitioners often use them, and I use natural practitioners to help me in healing after 30+ years of trouble.

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Also, uhm.. No one's heard of IgG food intolerance testing? I know it's somewhat controversal, and that elimination diets are typically what people do to try to figrie stuff out but I've already eliminated SO much and it still seems I react to absolutely everything I eat.

 

I feel like I'm drowning.

I've been on this paleo diet for 5 months and I feel worse and worse everyday. I don't know how much more I can take of this.. My stomach is stretched out so far it literally hurts to breathe!! I don't care what it is I'll have to do as long as I can get better. No one's been able to help me. My old GI doctor went as far as saying that it's IBS and I'll probably just feel like this forever. Granted, she also originally doubted I had Celiac Disease (before I got the biopsy and bloodwork) soley because diarrhea wasn't one of my symptoms... -__-

I don't know how much more of this I can take. THis whole thing has taken over me entirely. I'm not myself at all anymore. I don't care about any of the things I used to care about. I rarely even leave me house. I'm in constant agony 24/7...sometimes I"ll spend entire days crying... I feel like I'm being punished in a way. I was never really a happy person and now I realize how much I should have appreciated my life while I still had one.

I'm afraid I'll have to live like this forever. After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else.

Sorry for whining like this lol I know some of you don't really wanna hear it. I know my parents and my boyfriend are tired of hearing it. All I talk about it Celiac Disease and trying to find out what's wrong. I tried the FODMAP diet, the SCD diet, I once even did 2 weeks of eating nothing but homemade soup, gelatin, and baby food veggie purrees. Nothing helps at all. I never get a chance to breathe.

You are not alone.  You can PM me anytime as well.  It is exhausting and you want to scream, cry, give up, after talking to a GI you can even think am I nuts?  But, no, you know your body, and the test proves the food issues even if the GI tests are not showing all of them.  Being able to wear something one day and then not the next just because you ate something wrong.  Only someone that goes through it can understand it.  The C my hubby and I joked about it for years, until we realized how serious it was.  Last time in they weighed me, and I said really I gained 7 pounds in a week?  They will not do a colonoscopy, as I am not 50 yet??  Mostly what I eat these days are protein shakes and veggie juices.  I have a list of reflux friendly foods, low fodmap foods, of course gluten-free, and my food testing list, I match them up and see what I can have, and go from there.  I do not even like to go out anymore and I used to love to go out to dinner, we live around awesome restaurants.  Anyway, I get it.  You are not alone.... 

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AnnaChristine.

 

You said "After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else. " 

 

Are you really taking a hundred supplements a day.  Um...That could be a problem.  Why?  Does your Doctor approve of all the suppliments?  Have you checked for Interactions of all the Suppliments?

 

Colleen

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AnnaChristine.

 

You said "After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else. " 

 

Are you really taking a hundred supplements a day.  Um...That could be a problem.  Why?  Does your Doctor approve of all the suppliments?  Have you checked for Interactions of all the Suppliments?

 

Colleen

You can have your vitamin levels checked.

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AnnaChristine...I'm so sorry you are going through this.  I can feel your frustration.  As a mom of 3 I just want to give you a big ((((hug))).  I hope you are able to get some answers.  Know that you are not alone.

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AnnaChristine.

 

You said "After 5 months gluten free, dairy free, grain free, sugar free, taking a hundred supplements a day and I'm WORSE than I was before I was even diagnosed.....something's gotta be wrong. SOmething else. " 

 

Are you really taking a hundred supplements a day.  Um...That could be a problem.  Why?  Does your Doctor approve of all the suppliments?  Have you checked for Interactions of all the Suppliments?

 

Colleen

lol no obviously not a hundred :P But I do take a lot.

 I'm taking a supplement caleld DIgestive Advantage Constipation formula which helps me stay somewhat regular. I take a fish oil pill. A probiotic (acidophilus). Digestive enzymes with every meal. L-Glutamine on it's own, and also something called G.I. Revive powder which also contains L-Glutamine along with glucosamine, citris pectin, aloe vera, slippery elm, marshmallow, mucin, chamomille, okra extract, cat's claw, msm, prune powder, and zinc. I've heard many good things about the GI Revive which I just odered about a week ago, so I guess it's too soon to tell if it'll help. I also take regular vitamins (which yes are gluten-free....i know some of you are going to ask that)

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Hi AC18,

 

The last time I got glutened good it took about 6 weeks for the symptoms to fade,  So you are getting close to that time since you were glutened.  Just a thot.

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lol no obviously not a hundred :P But I do take a lot.

 I'm taking a supplement caleld DIgestive Advantage Constipation formula which helps me stay somewhat regular. I take a fish oil pill. A probiotic (acidophilus). Digestive enzymes with every meal. L-Glutamine on it's own, and also something called G.I. Revive powder which also contains L-Glutamine along with glucosamine, citris pectin, aloe vera, slippery elm, marshmallow, mucin, chamomille, okra extract, cat's claw, msm, prune powder, and zinc. I've heard many good things about the GI Revive which I just odered about a week ago, so I guess it's too soon to tell if it'll help. I also take regular vitamins (which yes are gluten-free....i know some of you are going to ask that)

 

What are some of those supplements for?  They are not typical for a recovering Celiac or the Nutritionally deprived. Do they have any interactions with each other?

 

Colleen

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Maybe try going off paleontologists?  I felt awesome on it at first, but then I started eating more nuts, and oh my goodness, the bloating, pain, and diarrhea were awful, I tried almond milk a few weeks ago, it went right through me (sorry if that grosses anyone out).  But that was much better than actual nuts, because the pain lasts for days.

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It's important to have someone monitoring all the supplements you are taking. It's true, they could be interacting with one another in bad way, and the one with the long list of ingredients could be bothering you. Sometimes for us the natural ingredients may sound good but can be related to something that is a problem for celiacs.

 

You need to have your vitamin and mineral levels checked by a lab that is ordered by some kind of professional healthcare provider, Find a Naturopathic Dr. preferably, or a nutritionist, or someone qualified who takes a more natural holistic approach - not a GI.

 

This isn't something you can do all by yourself. Vitamin/mineral deficiencies or taking too much of the wrong thing can have serious consequences to your health. Also you have to get enough protein in your diet to be able to heal. Someone should be monitoring your diet.

 

When we eat the Standard American Diet with processed foods and vitamin enriched foods, it's not as much of an issue to be worried about getting the right supplementation. Once your are eating whole foods, and dealing with malabsorption and malnutrition, it's critical to get the right balance of the right supplements and nutrition.

 

Don't wait on this. You are feeling terrible because something is off and you need to get it solved. See a professional who can get you on the right track. A Celiac has more than gastrointestinal issues, your brain is affected too, it's hard to think clearly. My brain fog has made it necessary for me to have family help me stay on track.

 

Is there someone who can help you find the right professional - your parents, a relative, a friend, someone near you in the same city who can help you? Get help with this. Don't try to do it alone.

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Yea I looked at that one too until I read the ingrediants. I'm taking the DIgestive Advantage Constipation Formula which doesn't contain gluten or dairy. It's the only thing that keeps me away from laxatives /:

 

Juicing green veggies is all that keeps me from constipation...not being used to the 'green' taste, I bought a basic juicer, and along with Romaine Lettuce, Head Lettuce, carrots, green peppers, cucumbers, celery, kale, red chard, asparagus, sugar snap peas, tomatoes, avocado, and mustard leaves (someof this stuff has to be processed with a food processor before being juiced - use plain cucumber juice with soft leaved veggies, process, then juice the remains), but to keep it palatable I added apples, pears and grapes to taste.  Then, I slowly reduced the fruits, until I could handle the just the veggies.  And as long as I drink 4 cups a day of the juice, I have smooth bowels that don't hurt, and don't burn, although they do look a bit green. I do not use a juice that eliminates all pulp, since it is the soft fiber bits that keep me going.  Your juice should be a little bit smoothie/creamy in texture from the avocados and fruit, not just watery juice, and the natural oils there are great for you too.

 

I had to go off the fruit additives because of Type II Diabetes, and reluctance to take insulin or any other drugs I can avoid...technically my diabetes is food controllable, if a tad high overall (120 average).

 

Now, I am so hooked on the veggie juice, I dislike not having it as part of my diet, and when I run out, two days later my stools are stones again.

 

Worth a try.

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Juicing green veggies is all that keeps me from constipation...not being used to the 'green' taste, I bought a basic juicer, and along with Romaine Lettuce, Head Lettuce, carrots, green peppers, cucumbers, celery, kale, red chard, asparagus, sugar snap peas, tomatoes, avocado, and mustard leaves (someof this stuff has to be processed with a food processor before being juiced - use plain cucumber juice with soft leaved veggies, process, then juice the remains), but to keep it palatable I added apples, pears and grapes to taste.  Then, I slowly reduced the fruits, until I could handle the just the veggies.  And as long as I drink 4 cups a day of the juice, I have smooth bowels that don't hurt, and don't burn, although they do look a bit green. I do not use a juice that eliminates all pulp, since it is the soft fiber bits that keep me going.  Your juice should be a little bit smoothie/creamy in texture from the avocados and fruit, not just watery juice, and the natural oils there are great for you too.

 

I had to go off the fruit additives because of Type II Diabetes, and reluctance to take insulin or any other drugs I can avoid...technically my diabetes is food controllable, if a tad high overall (120 average).

 

Now, I am so hooked on the veggie juice, I dislike not having it as part of my diet, and when I run out, two days later my stools are stones again.

 

Worth a try.

Also, I add in liquid vitimins...ionic calcium, zinc, magnesium, potassium, liquid daily vitamins including all B's, and liquid trace minerals... yet I can tell I am mal-absorptive just by my nails...I eats tons of protein, and yet my nails show Onychorrexis, Median Nail Dystropy; Leukonychia, and more that I can't spell!  I'm only on Day 4 of no gluten, so it will be a long while before I show some signs of healing.

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lol no obviously not a hundred :P But I do take a lot.

 I'm taking a supplement caleld DIgestive Advantage Constipation formula which helps me stay somewhat regular. I take a fish oil pill. A probiotic (acidophilus). Digestive enzymes with every meal. L-Glutamine on it's own, and also something called G.I. Revive powder which also contains L-Glutamine along with glucosamine, citris pectin, aloe vera, slippery elm, marshmallow, mucin, chamomille, okra extract, cat's claw, msm, prune powder, and zinc. I've heard many good things about the GI Revive which I just odered about a week ago, so I guess it's too soon to tell if it'll help. I also take regular vitamins (which yes are gluten-free....i know some of you are going to ask that)

 

You might want to have a look at this: http://www.biomedcentral.com/1741-7015/11/222

A supplement might not contain what's on the label.

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Hi AnnaChristine , I hope you don't mind me suggesting something ,

to help you find out what's bothering you ,

You need to stop all those supplements ,

Keep it simple

Start again

using good whole foods to heal , boiled white rice, fish, meat veggies fruits ,a little gluten-free bread too if it agrees ,

Then get all your vitamin and mineral levels tested properly by a celiac Doctor

before you take anything else

Hope you don't mind my saying

Jiggles x x

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Hi AC18,

 

The last time I got glutened good it took about 6 weeks for the symptoms to fade,  So you are getting close to that time since you were glutened.  Just a thot.

Hi there,  I couldn't help but see this and want to ask you.  6 weeks?  A lot of people say they feel symptoms for a few days, a week.  But I started feeling symptoms on April 30 and although I'm now finally seeing improvement, that's over 3 weeks.  I thought I was the only one with this long tortured thing going on.  Any thoughts on why it would take so long?  Do your symptoms start out bad and then gradually get better over that time? 

 

Thanks!

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It's not unheard of for symptoms to last 3 weeks or so.  The immune system ramps up when glutened.  It takes time for it to settle down.  With some of us, if we get hit, all kinds of things happen, all the other AI stuff starts up, everything aches, headaches, etc.  It;s not just bowel issues.  

 

Your not alone,

 

Colleen

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It's not unheard of for symptoms to last 3 weeks or so.  The immune system ramps up when glutened.  It takes time for it to settle down.  With some of us, if we get hit, all kinds of things happen, all the other AI stuff starts up, everything aches, headaches, etc.  It;s not just bowel issues.  

 

Your not alone,

 

Colleen

Thanks Colleen...it helps to hear that.
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It's not unheard of for symptoms to last 3 weeks or so.  The immune system ramps up when glutened.  It takes time for it to settle down.  With some of us, if we get hit, all kinds of things happen, all the other AI stuff starts up, everything aches, headaches, etc.  It;s not just bowel issues.  

 

Your not alone,

 

Colleen

3 weeks? I said FIVE MONTHS

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Hi there,  I couldn't help but see this and want to ask you.  6 weeks?  A lot of people say they feel symptoms for a few days, a week.  But I started feeling symptoms on April 30 and although I'm now finally seeing improvement, that's over 3 weeks.  I thought I was the only one with this long tortured thing going on.  Any thoughts on why it would take so long?  Do your symptoms start out bad and then gradually get better over that time? 

 

Thanks!

WHy do people keep saying "3 weeks" Ive been gluten free, and paleo for five months! And I feel WORSE

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WHy do people keep saying "3 weeks" Ive been gluten free, and paleo for five months! And I feel WORSE

Because she is talking about HER experience? There are others on here trying to share their experiences with the thought that it might be helpful to you. That's part of a forum.

If being " paleo" makes you feel bad, maybe you shouldn't do that diet?

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WHy do people keep saying "3 weeks" Ive been gluten free, and paleo for five months! And I feel WORSE

AnnaChristine...I'm sorry to have upset you. I was responding to someone who mentioned glutening symptoms lasting for 6 weeks. It was not meant to upset you. I hope that you feel better soon.
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WHy do people keep saying "3 weeks" Ive been gluten free, and paleo for five months! And I feel WORSE

 

AnnaChristine, the 3 weeks, 6 weeks references that are being confused with your original posts are from other people on the thread trying to tell you how long just a single dose of gluten can set you back, and that is if you are stable.

 

You aren't stable...you don't even know which foods you are reacting to, or how bad your system has gotten screwed up.  Taking lots of supplements is hard on the Upper GI, and the damaged Upper GI will absorb only a little of them.  The Naturalists and Nutritionists would tell you to take some of the basic minerals and vitamins you are missing, and keep raising the dose until you absorb something from them.  Your Upper GI isn't absorbing much from what you eat.

 

As to your foods, Paleo is wonderful, but your body is screaming there is something not being fixed just by going off of gluten, dairy, and everything that is any fun to eat.

 

Your body is telling you that what you are eating is not working, and that your supplements are not doing the job either.  You must simplify what you are eating and absorbing, so you body can rest and heal.  Yes, you need to stay off gluten, and dairy, and anything not produced by a plant or the animals that eat the plants for the time being.  But you are not listening to your body.  It doesn't like something that you are doing, and there is a lot of things besides gluten that can irritate your insides.

 

What are your main symptoms...the top three symptoms that are making you miserable?  Is it Diarrhea and Bloating...Constipation and Bloating...Stomach cramps?  What is it that you can isolate as a problem?  What foods can you get down, that will stay down, and not give your symptoms?  If you are eating a wide variety of food, you cannot tell what is triggering your symptoms except the knowledge that gluten is a big cause.  Fine, you are off gluten...you don't eat processed food...you have a seperate kitchen, so there is no cross contamination.

 

So something you are eating is hurting you on top of your Celiac.  Or something you are not eating is a problem.  But until you narrow down your food list, and eat the exact same foods every day for a while, you cannot figure it out.

 

It would also help if you ate a single food at a time, and waited for a reaction before eating something else a couple of hours later.  We react to food quickly because we have messed up digestion, but you cannot locate a pattern if you keep changing what you are putting inside your body every few weeks.

 

You keep adding things by supplements, and you don't know if there is something in there irritating you either.

 

Please, go back to the beginning.  Choose a handful of things to eat for several weeks, or even months, and don't change them.  Take your vitimins and minerals.  Avoid gluten of course, and anything you think will be bad for you, but stop throwing everything at your body at once, trying to get it fixed.  Simplify what you eat, eat it over and over, and listen to your body. 

 

We all want to pick you up, and get you fixed, but we can't.  Only you can fix you...we can tell you what to watch out for, or what we did, but you are the scientist AND the guinea pig.  You have to get logical and practical about this, and stop trying to magically fix yourself with a potion!  You body needs time to heal...and you need to take the time to study yourself.

 

It will get better, you will get well, and you will have done it.  I will help you.  Everyone here will help you. But you have to do it, and now that you know what you have been doing isn't helping you heal properly, you have to find out what else is the problem!

 

Start over, keep it simple, and repeat until you figure out which of the foods you are eating is hurting you.

 

And many hugs being sent to you.XXXXX

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Hi there,  I couldn't help but see this and want to ask you.  6 weeks?  A lot of people say they feel symptoms for a few days, a week.  But I started feeling symptoms on April 30 and although I'm now finally seeing improvement, that's over 3 weeks.  I thought I was the only one with this long tortured thing going on.  Any thoughts on why it would take so long?  Do your symptoms start out bad and then gradually get better over that time? 

 

Thanks!

 

HI Icelandgirl,

 

Yes, my symptoms start out bad and decrease over time.   Why the length of time?  Well, the immune system wants to keep us safe from invading germs.  So it keeps making antibodies for a while after they are needed.  And the antibodies don't die off instantly also.  So the effects can last a while after a glutening.  I was talking about physical symptoms, but damage isn't always felt and could be going on longer than that.  One study a while back showed negative changes in the gut lining remained after 18 months on a gluten-free diet for some people.   It's not an instant fix to  repair the gut.  But we are gluten-free for life so it happens when it does.  :)

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    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
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