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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I'm not even sure where to start. I'm so frustrated with being sick for over 2 years now. First, every time I was tested for celiac, the tests were negative, but recently the genetic test was positive. Everything else was negative again. So, my Dr. and I think that it is likely I have celiac, but we are not sure since my diets have not been helping me. I've been tested for everything else as well and I went to 11 other doctors in hopes of finding out what is wrong with me. I really wish my problem was just avoiding gluten. The list is endless. So endless that I cannot keep track of what I react to and don't react to anymore. Even when I eat plain whole foods, non processed, I feel like I react to something at least once a day. Then, it overlaps with the next day and I have no idea what it was I reacted to. I have been avoiding gluten, dairy, corn, vinegar and most starches. I tried the GAPS diet and I just could not stick to it, as it got extremely expensive and boring. It is really hard for me to stick to eating the same foods day after day. Especially when I continue to react, which I did. Then, I get frustrated because I feel like my hard work of trying to get better is not working. I even buy all organic veggies and meats now because I am so afraid that I will react to all the pesticides and chemicals. I am extremely sensitive to everything it seems! I'm a college student and I don't work, so I really can't afford all organic food, but I'm hoping that it is worth it. I am always constipated and have a really slow digestive system, as I hardly have regular bowel movements. Maybe once every few days. I constantly feel bloated. Almost everytime I eat I get swollen. By this I mean that my face, hands, ankles, and legs swell up. I don't have any allergies, so this is not an allergic reaction. But, because I'm so extremely sensitive I think it is my immune system reacting to fight off what it thinks is foreign. ??? Of course I have the other usual intolerance symptoms as well, but the swelling thing is the most obvious. Some days I barely eat and because I reacted to something, the scale will say that I'm 2-5 lbs more the next day (because of the swelling). It is extremely difficult for me to lose weight. I do hot yoga almost daily and run and hike as well, and I eat healthy and don't eat a lot, and I am still having trouble losing weight.

I think I'm ok with certain meats and veggies, but my body seems to pick and choose when it wants to react to something. It is very unpredictable. Even with the same foods. One day I will react and one day I won't. I am unbelievably stressed over all of this. I even got rid of all my makeup, products, cleaning supplies, etc. and bought all gluten free and chemical free products instead. So far, I don't notice a difference at all. I take digestive enzymes, probiotics, B12, multivitamin (Solgar), and Magnesium.

This week I decided to try juicing. I tried it when I first got sick (2 yrs ago) and it didn't work because I kept reacting to all the veggies and fruits I was juicing. So, now I thought that I would try it again and juice only one ingredient at a time. All organic as well. I juiced celery last night and ate an organic banana and I became really swollen about an hour afterward. I woke up the same way. Today I tried juicing spinach and had some organic free range chicken (that I made in the crock pot). Again, I'm swelling up again. I honestly don't know what to do at this point. I thought that juicing was easier on your digestive system because you don't have to break down the foods. Is this true or could it make matters worse? I am trying so hard and because of it I am broke and having relationship problems as well. This is all making me crazy. Literally. I'm becoming obsessed because I just want to get better and nothing is working. I barely sleep because I am constantly thinking of what to do, new strategies, reading posts of the forum, etc.

To make matters worse, whenever I get emotional or stressed, I crave food (as I had an eating disorder my whole life) and sometimes I end up eating things that I shouldn't be eating or too much of them anyways. I usually stay gluten free at least, but because of the frustration and depression, the food ends up winning. I don't do this a lot, but it happens occasionally. I can't control it at times. If I could find a diet that will work and I could finally start feeling better, at least it would give me hope and the motivation to not give in to food cravings. But, nothing is working. So, I end up thinking "what is the point of all of this?!" And then I end up eating chips or gluten free/dairy free ice cream, etc. I even react to nuts. I need variety in my diet or else I go crazy and start craving all types of foods. But, I don't have that privelage. I'm lucky I can eat a few foods without reacting. I don't think I have had one totally good day without reacting in over 2 years now. Even on my good days, I still have minor reactions or it feels like I am anyways. This is all so crazy. I don't understand it.

I'm truly sorry that I went on and on, but I am at a breaking point and I don't know what to do. I was feeling so positive and motivated too. At least I have my hot yoga. It definitely helps me stay sane and positive (most of the time). If I didn't have that, I don't know where I'd be right now. This is embarressing, as I usually don't share all of this with people I don't know, but I really could use some support and advice right now. I'm not getting anywhere with my medical issues. I don't even know for sure that I am celiac and what foods are safe for me to eat. I really really want to be at that point. :( Any help would be greatly appreciated. Thank you.

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I'm sorry you're going through all of this.

Have you had your thyroid tsh/t3/t4/TPO antibodies checked?

Have you read about salicylates or amines intolerance? http://salicylatesensitivity.com/info6/

A few of the doctors checked my thyroid a couple times and it was ok. No, I haven't heard of salicylates or amines intolerances? Do you have those? I'll look it up. Thanks for the info.

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I have a little problem with a few sals. Others here have major issues with many of them... It wouldn't be shocking of you have an issue. Seems to go eith gluten issues, unfortunately.

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I'm not even sure where to start. I'm so frustrated with being sick for over 2 years now. First, every time I was tested for celiac, the tests were negative, but recently the genetic test was positive. Everything else was negative again. So, my Dr. and I think that it is likely I have celiac, but we are not sure since my diets have not been helping me. I've been tested for everything else as well and I went to 11 other doctors in hopes of finding out what is wrong with me. I really wish my problem was just avoiding gluten. The list is endless. So endless that I cannot keep track of what I react to and don't react to anymore. Even when I eat plain whole foods, non processed, I feel like I react to something at least once a day. Then, it overlaps with the next day and I have no idea what it was I reacted to. I have been avoiding gluten, dairy, corn, vinegar and most starches. I tried the GAPS diet and I just could not stick to it, as it got extremely expensive and boring. It is really hard for me to stick to eating the same foods day after day. Especially when I continue to react, which I did. Then, I get frustrated because I feel like my hard work of trying to get better is not working. I even buy all organic veggies and meats now because I am so afraid that I will react to all the pesticides and chemicals. I am extremely sensitive to everything it seems! I'm a college student and I don't work, so I really can't afford all organic food, but I'm hoping that it is worth it. I am always constipated and have a really slow digestive system, as I hardly have regular bowel movements. Maybe once every few days. I constantly feel bloated. Almost everytime I eat I get swollen. By this I mean that my face, hands, ankles, and legs swell up. I don't have any allergies, so this is not an allergic reaction. But, because I'm so extremely sensitive I think it is my immune system reacting to fight off what it thinks is foreign. ??? Of course I have the other usual intolerance symptoms as well, but the swelling thing is the most obvious. Some days I barely eat and because I reacted to something, the scale will say that I'm 2-5 lbs more the next day (because of the swelling). It is extremely difficult for me to lose weight. I do hot yoga almost daily and run and hike as well, and I eat healthy and don't eat a lot, and I am still having trouble losing weight.

I think I'm ok with certain meats and veggies, but my body seems to pick and choose when it wants to react to something. It is very unpredictable. Even with the same foods. One day I will react and one day I won't. I am unbelievably stressed over all of this. I even got rid of all my makeup, products, cleaning supplies, etc. and bought all gluten free and chemical free products instead. So far, I don't notice a difference at all. I take digestive enzymes, probiotics, B12, multivitamin (Solgar), and Magnesium.

This week I decided to try juicing. I tried it when I first got sick (2 yrs ago) and it didn't work because I kept reacting to all the veggies and fruits I was juicing. So, now I thought that I would try it again and juice only one ingredient at a time. All organic as well. I juiced celery last night and ate an organic banana and I became really swollen about an hour afterward. I woke up the same way. Today I tried juicing spinach and had some organic free range chicken (that I made in the crock pot). Again, I'm swelling up again. I honestly don't know what to do at this point. I thought that juicing was easier on your digestive system because you don't have to break down the foods. Is this true or could it make matters worse? I am trying so hard and because of it I am broke and having relationship problems as well. This is all making me crazy. Literally. I'm becoming obsessed because I just want to get better and nothing is working. I barely sleep because I am constantly thinking of what to do, new strategies, reading posts of the forum, etc.

To make matters worse, whenever I get emotional or stressed, I crave food (as I had an eating disorder my whole life) and sometimes I end up eating things that I shouldn't be eating or too much of them anyways. I usually stay gluten free at least, but because of the frustration and depression, the food ends up winning. I don't do this a lot, but it happens occasionally. I can't control it at times. If I could find a diet that will work and I could finally start feeling better, at least it would give me hope and the motivation to not give in to food cravings. But, nothing is working. So, I end up thinking "what is the point of all of this?!" And then I end up eating chips or gluten free/dairy free ice cream, etc. I even react to nuts. I need variety in my diet or else I go crazy and start craving all types of foods. But, I don't have that privelage. I'm lucky I can eat a few foods without reacting. I don't think I have had one totally good day without reacting in over 2 years now. Even on my good days, I still have minor reactions or it feels like I am anyways. This is all so crazy. I don't understand it.

I'm truly sorry that I went on and on, but I am at a breaking point and I don't know what to do. I was feeling so positive and motivated too. At least I have my hot yoga. It definitely helps me stay sane and positive (most of the time). If I didn't have that, I don't know where I'd be right now. This is embarressing, as I usually don't share all of this with people I don't know, but I really could use some support and advice right now. I'm not getting anywhere with my medical issues. I don't even know for sure that I am celiac and what foods are safe for me to eat. I really really want to be at that point. :( Any help would be greatly appreciated. Thank you.

It's possible you could be reacting to soy? It's probably in your vitamins/supplements which is why you feel bad every day, no matter what you eat?

Can you try eliminating every trace of soy for about a week and see if it helps? It's tricky because it hides in a lot of things.

Also, a B1 (thiamin) deficiency can cause water retention, especially in lower limbs. They don't usually test for it. With a gluten-free diet you may not be getting enough because wheat products are fortified with it, gluten-free are not. Try adding a B complex rather than just B12?

I'm so sorry you feel bad. It gets old doesn't it? :(

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It's possible you could be reacting to soy? It's probably in your vitamins/supplements which is why you feel bad every day, no matter what you eat?

Can you try eliminating every trace of soy for about a week and see if it helps? It's tricky because it hides in a lot of things.

Also, a B1 (thiamin) deficiency can cause water retention, especially in lower limbs. They don't usually test for it. With a gluten-free diet you may not be getting enough because wheat products are fortified with it, gluten-free are not. Try adding a B complex rather than just B12?

I'm so sorry you feel bad. It gets old doesn't it? :(

Thank you both. I am feeling a little better today. I just ate the leftover chicken and some spinach/celery juice (freshly juiced). There is no soy in any of the supplements I am taking. And I don't think it is in any of the products/makeup I am using either, but I will double check. Can you recommend a good brand of B vitamin complex to take? I have been using Solgar for multi-vitamin and Magnesium as they are free of all allergens. What is is called exactly? Thanks for all your help. :)

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Thank you both. I am feeling a little better today. I just ate the leftover chicken and some spinach/celery juice (freshly juiced). There is no soy in any of the supplements I am taking. And I don't think it is in any of the products/makeup I am using either, but I will double check. Can you recommend a good brand of B vitamin complex to take? I have been using Solgar for multi-vitamin and Magnesium as they are free of all allergens. What is is called exactly? Thanks for all your help. :)

I haven't tried the Solgar brand vitamins, but I hear good things about them.

Currently I'm taking Vitacost B-100 complex. It has the usual B vitamins, along with choline and inositol. I did a quick check and the Solgar brand of B-complex looks the same? I'll try putting a link but I don't know if it will work? When we are stressed our bodies burn through B vitamins. If we stay away from gluten foods, which are usually fortified with B vitamins, we can run low on them.

http://www.vitacost.com/vitacost-b-100-complex-delayed-release

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I haven't tried the Solgar brand vitamins, but I hear good things about them.

Currently I'm taking Vitacost B-100 complex. It has the usual B vitamins, along with choline and inositol. I did a quick check and the Solgar brand of B-complex looks the same? I'll try putting a link but I don't know if it will work? When we are stressed our bodies burn through B vitamins. If we stay away from gluten foods, which are usually fortified with B vitamins, we can run low on them.

http://www.vitacost.com/vitacost-b-100-complex-delayed-release

Thank you. How much B complex should we be getting per day? Does the B complex include B12 or do you always have to get B12 separately? I'm already broke financially, so I would like to save wherever possible.

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What if I just took 2 mulit-vitamins instead of 1 per day? Or, does it really make a difference that I buy individual vitamins that I may be deficient to? Like I said, I will do whatever it takes in order to get better, but I will try to save money in every way possible. I am also deficient on Vitamin D. Does this cause a lot of problems as well? Thanks.

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You are stressing yourself crazy, hon-- and having been there/done that, I feel for you. Do not weigh yourself every day (weight fluctuates in us constantly) and try not to push yourself to lose weight too fast with too many sessions of hot yoga. :blink: You are recovering from a serious autoimmune disease. Your body is fatigued.

Constant constipation is frustrating, I know. Drink a lot of water. Take the probiotics on a daily basis. They help to resolve constipation. An inexpensive one that works well is Culturelle (G F and DF.)

Taking a good multivitamin covers the B vitamins. Don't worry about B-12 unless you have B-12 anemia ?(as shown on blood work)

No point in mega-dosing unless you have a deficiency. Too many Bs can cause more problems than you need right now.

If you want to add some Vitamin D-3--NOW brand makes a 1,000 IU that is safe and is not pricey at all. How deficient were you? What dosage were you told to take?

Juicing is good for some people, but it made me sick as a dog when I was still healing my GI tract.

It is sometimes difficult for our guts to process even juiced products.

Can you take it back to plain? Rice, chicken, hamburger, fish, eggs. Veggies, fruits, nuts. If you have cravings, indulge a little. A little. :)

Most of all, I can almost feel your frustration. Losing sleep, frantically searching for answers and worrying is doing you no favors. Trust me, I did the exact same thing for 3 years --and even after DX for a few months---and once I stopped worrying about how I felt on a day-to-day basis and focused on this healing as a process, I started to make progress.

Try to relax, hon. In my humble opinion, it does not matter that your veggies are organic, when you are so stressed out and not even enjoying eating them.

I wish you well.

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I haven't tried the Solgar brand vitamins, but I hear good things about them.

Currently I'm taking Vitacost B-100 complex. It has the usual B vitamins, along with choline and inositol. I did a quick check and the Solgar brand of B-complex looks the same? I'll try putting a link but I don't know if it will work? When we are stressed our bodies burn through B vitamins. If we stay away from gluten foods, which are usually fortified with B vitamins, we can run low on them.

http://www.vitacost.com/vitacost-b-100-complex-delayed-release

I stand by my recommendation of the B vitamin complex. The swelling is what caught my attention. A B1 shortage can cause it.

B vitamins are water soluable. Whatever your body doesn't need is passed out through your urine. They don't build up.

Doubling up on a multi-vitamin might give you a bit too much of something and throw things out of whack? B vitamin complex supplements are pretty inexpensive.

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I stand by my recommendation of the B vitamin complex. The swelling is what caught my attention. A B1 shortage can cause it.

B vitamins are water soluable. Whatever your body doesn't need is passed out through your urine. They don't build up.

Doubling up on a multi-vitamin might give you a bit too much of something and throw things out of whack? B vitamin complex supplements are pretty inexpensive.

I agree--do not double up on multivitamins--that will not work at all.

And I agree that a B-complex is fine. In no more than 100 mgs. daily. They can cause stomach upset, though.

I will, however, have to respectfully disagree with you about B vitamins not building up and causing toxicity.

Too much of ANY B vitamin will cause an imbalance of the others.

I happened to me with B-12 and Folate supplementation (taken for anemias and prescribed to me )and my GI doctor was the one who told me to back off immediately when the levels climbed so high. I had burning neuropathy that I was trying to eliminate--and it caused an INCREASE.

There have been many discussions about this on here and I do not wish to argue with you (or anyone for that matter :) ) but ANY vitamin mega-dosing can cause a problem.

Vitamin A in excess can be very dangerous, for example.

But, everyone has the right to do what he/she thinks is best.

Best Regards, IH

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Thank you so much. I appreciate all the advice. Like I said, I'm doing a little better the past two days, but still minor swelling I think. It's hard to tell, because I am swollen so much. The swelling is just a part of the food reaction. It doesn't seem like many people have as bad a problem of this as I do though. ?? So, juicing can be bad even though it is easier to digest? Why would juicing as opposed to cooking the veggies be worse? It's weird. Maybe cause it goes into your body much quicker and its a shock to your body? I have no clue. I will try the B-complex and see if it helps. Irishheart, you are so right. Everything you said is exactly what I do and I shouldn't, but I just can't help it. I'm so frustrated. I just want to get to the point where I have some control over my reactions and I feel like I'm on the right track at least. I haven't really found that yet. :( Is it important to get all organic meats? I'm so afraid of every little chemical or hormone or additive, etc. in the regular foods. If I react to the meat and its not organic, maybe I wouldn't have reacted to it if it was organic. How would I know then, you know? But, if it really isn't much different, then I won't waste my time and money buying organic. Any opinions would be great. If I am that inflammed and super sensitive, is it really possible that I could be reacting to almost everything that I put into my body? It just seems so crazy and unrealistic. I'm still unsure if I'm reacting to the organic chicken that I'm eating (plain), but if I am it is pretty minor. Just annoying, because not one day goes by without some kind of reaction. I will try to stick with the basic basic foods, as I am doing now for as long as I can. Thank you again for your help! I love this forum. It helps so much :)

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Amines and salicylates. Google it. Sorry so short on phone at restaurant.

Thank you. I will. I've just been so busy, I haven't had a chance.

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If I am that inflammed and super sensitive, is it really possible that I could be reacting to almost everything that I put into my body? It just seems so crazy and unrealistic.

This will be a long answer, sorry, but I will try to answer all the questions you posed and provide the dietary guidelines for reducing salicylates, amines, etc. I have been in your shoes and I feel for you.

For someone to be allergic and reacting to almost everything is unusual, but I was the same way for several years and even after DX-- for many months. Yet, all allergy testing and IgG food testing revealed nothing except...a severe soybean intolerance (in addition to the celiac and a secondary dairy intolerance that has since resolved)

Even when I eliminated all soy products, I STILL felt lousy. Why? I was not healed yet. If the gut is leaky or damaged, food intolerances arise ( so is the prevailing thought.)

I'm sorry you are suffering and it IS perplexing, but unless you have severe allergies which is NOT the same as food intolerances, the best explanation anyone has ever given me for bloating and feeling swollen (advice from my trusted GI doc and many veteran celiacs )is long-term inflammation from my system being ill from the celiac. Until it dies down, you will feel lousy and it will seem as if everything you eat is giving you grief.

Hon, honestly, none of us can tell you WHY you are inflamed. We are all offering suggestions about foods and supplements and an approach to eating that has worked/failed for us.

Some people have a sensitivity to soy and the salicylates in foods. Others react to MSG and "amines".

I have had seemingly "allergic" reactions while very ill from the unDXed Celiac (multiple chemical intolerances, itchy, burning GI tract and mouth, sores on my skin and sores on a peeling scalp, swollen itchy eyelids, and a feeling that my skin was too tight and burning. It was very painful). It started to subside after going gluten-free, but I still felt like I was "swollen" , so I took out many of these foods to see if it would reduce the inflammatory response in me. It helped and then I gradually added foods back in--felt fine--and then, I had the same histamine-type response occur. Why? who knows? I had allergy testing done and it revealed absolutely nothing right?... yet here I am with swollen eyelids and edema and bowel issues after eating scallops and crab last week and shrimp on Sunday. Too much shellfish, I guess. :rolleyes:

What does this mean? that's the hard part. No one can say for sure why some people recover quickly and some celiac guts do not automatically recover and allow us to eat without pain and issues. IT takes TIME is the only answer.

This is frustrating for us all. I live in 24/7 pain and I wish it would stop right now, but all anyone can tell me is...it takes time for the inflammation to die down. (I hate that answer! <_< )

We are trying to help you with suggesting some foods that we know could well cause this problem in you. You can try eliminating them and see if it helps. I used the Failsafe diet. It is very strict but it takes out the sals, the amines, MSG, preservatives and chemicals of all kinds, and any other foods that have been shown to cause reactions in people.

When you use this term, inflamed...do you mean you "feel swollen" or are you BLOATED in the abdomen or are you red, itchy, that sort of thing? For me, inflammation causes swelling in my hands, feet and face and basically, I feel as if I am a stuffed sausage in casing that is too tight and my skin actually burns. :blink:

To spare you the googling, here is a summary of the list of foods on the Failsafe Diet. It is very strict and excludes amines, sals, dyes, preservatives, chemicals, MSG etc. You can try it, but I warn you--it gets boring. :rolleyes: If you have a dairy intolerance, it is even more limiting. I am no doctor, so this is not medical advice! Prickly and Bubba'sMom and everyone--we are just tying to help.

here is the website

http://failsafediet.wordpress.com/

Eat only these foods:

White rice

brown rice

white potatoes

canned beans

green beans

brussels sprouts

cabbage

fresh, unroasted cashews

celery

chives, coriander, garlic

leeks

iceberg lettuce

pears

gree scallions

rutabaga

Irish butter

goat milk

buffalo milk mozzarella

sour cream

plain yogurt (re-sealable top)

farmer's cheese/cottage cheese

plain cream cheese

ricotta cheese

milk

eggs

small individual pears in syrup

beef

veal

lamb

fish, crab, lobster, scallops

white sugar

rice syrup

maple syrup

Lyle's golden syrup

decaf instant coffee

water

gin,vodka, neat or with soda

Hope this helps.

My best advice--for what it is worth--please try to calm down. Try to stop stressing. (I know, easier said than done, right?)

Take epsom salt baths.

Good luck and let us know how you do.

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    • My son is 13 and we have been dealing with his unusual issues for years. By 3rd grade, he was The Hulk, breaking things, punching holes in walls and raging. He had depression, anxiety and panic attacks. His skin would have rashes or turn bright red and i didn't understand why (now i know it's salicylic acid added to conditioner, sunscreen, lotion, ect). We realized that dyes were a problem and cut those out. Little by little, we removed sulfur, sulfites, preservatives, salicylates (aspirin-we assume he will be allergic to this but he has never had it and we won't ever test it, most fruits, spices, veggies and honey), nitrates, soy sauce and many more. He lived on an all home made, special diet and he was better but not well. (We did the Feingold and Failsafe Diet but that wasn't enough). He was diagnosed with hypersensitivity to medication by 5th grade (tried anti-anxiety meds-big mistake). Consecutive doses of anything would get stuck in his body and then the real fun started, full body rash, suicidal thoughts, vomiting and my least favorite-hallucinations. He was in the ER for a fall from a tree and they gave ibuprofen and Vicodin. Within 30 minutes the rash spread up and down his whole body (including under the damn cast). The worst night of my life was trying to keep him from breaking his own cast off and talking him down from trying to hurt himself.                                                                                                                                                                                                                                                             We tested my son for everything and anything, hormones, vitamin deficiency (later found out they don't test for nearly enough to really know) and thyroid. Everything was normal but a mildly low vitamin D level. He was very unhealthy, he was sick a LOT, allergies were bad, asthma and he developed food intolerances out of nowhere. We did a gluten/dairy free diet (because his sister is gluten/dairy free) but it made no difference and his diet was already so restricted. We did a year long food journal and also found an issue with pork, apples, citrus fruit, cinnamon, ect.  I researched my kid like it was my job. We tried many vitamins and supplements and he had bad reactions to many of them. I finally found a man with several of the same gene mutations (we tested with 23andme.com) who's Dr. thought it was a PST-Pathway issue. We decided to try the protocol of vitamins, supplements and amino acids to see if it made any difference and OMG, what a difference. At this point, we didn't have a pediatrician that actually listened so I asked several doctors about the specific vitamin/minerals/amino acids and kept all the does to a child size dose.  We had always used epsom salts as a response to a reaction in something, not as a preventative measure. We now soak his feet twice a day in Epsom salt water (or in the bath), it gives him a form of sulfur that his body was missing and now he can eat anything he wants (except soy sauce but we'll gladly leave that out). He takes molybdenum everyday with magnesium/calcium and vitamin D3 (and when we stop that, panic attacks come back. Weekly he takes milk thistle (we tried L-Glycine but too much gave him terrible insomnia (like 3 days of barely any sleep) and milk thistle works just as well to keep his liver open and working it's best), B vitamins, Cod liver oil capsules with Vitamins A and D and liquid Zinc.  His personality changed on the L-Glycine in a more outgoing way but then in a manic, not himself way so that scared us. Since the supplements started (6 months ago), his anxiety and depression is gone (and it was really controlling how we lived). He would never talk to people before...he was diagnosed with selective mutism but we felt that was incorrect and he was just very shy. He never liked talking with adults. Now, there is no problem, he is not super chatty with everyone but all he adults in our family noticed immediately. He is ready to stop home schooling and start high school next year. He has become a responsible, sweet, calm and caring child. No more daily fights, no more holes in the walls, no more rage. Our daughter has anorexia and we have been very busy dealing with her behaviors and missed the daily vitamins on occasion for several days....old son comes raging back. It doesn't take too long to figure out the mistake and gets him back where he needs to be. We did some genetic testing with a neurologist who specializes in metabolic function and while he tested for some helpful issues relating to hypersensitivity to medication, I still got the impression that he thought it was a placebo effect. We have burned through many therapists, pediatricians, a neuropsychologist, a psychiatrist, a gastroenterologist and possibly this neurologist. I hate not being taken seriously because while they may not agree with my ideas, they have nothing to offer in return.   
    • Yep no fruit, juice, sugar, or grains like oatmeal. The sugars glucose, fructose etc. Are common causes of flares in some. Sugar free fiber like nuts, but butters, cocanibs seem to be great for me. Keto diet sugar free high fat, mostly over cooked to mush or blended works great for me......heck as a baker I had to invent low carb, grain free, starch free bread. Sorta lead to a god like revelation and business took off with diabetics and my bakery.
    • Gastritis was my initial diagnoses before finding out I had celiac. The pains from the gastritis were terrible. I had to wake up in the middle of the night to eat cause I felt nauseous. The Doc prescribed me omeprozole and antacids. I took the meds for about a week but I cured it mostly by not drinking and eliminated caffeine intake. Alcohol was one of the main causes for mine 
    • The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes.  Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  
    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
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