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Frustrated!
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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.

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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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    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
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