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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

Seriously, Will It Ever Get Better?
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Hi. I'm relatively new to this forum and so apologize for making one of my first posts what will surely be a rant. I was diagnosed Celiac through bloodwork and biopsy in January and have been eating a *strict* gluten-free diet since then. I had no Celiac symptoms prior to diagnosis - just years of unexplained joint and muscle pain - but since going gluten-free, I am an utter mess. My pain problems have improved somewhat but I have awful brain fog, dizziness, and bloating which are more uncomfortable/debilitating than the pain issues ever were.

In addition to the above problems, I seem to be developing an intolerance to everything. I've kept a very thorough food diary since starting the diet as pronounced bloating started around week 3 and I'm now trying to eat lactose free, grain free and low FODMAP in addition to being gluten-free.

I feel like I'm essentially about to be down to eating meat and veg and I'm really wondering if the trade is worth it. On gluten I had pain, yes, but it was accompanied by clarity, spontaneity and fun. On gluten-free, I'm spending all of my time cooking but, you know, only when the brain fog is light enough that I can follow a recipe. :)

And, truly, I can't emphasize enough how strictly I'm following the diet - all kitchen items replaced, very infrequently dining out at and always at locations with gluten-free menus and accommodating managers. I am taking vitamins in response to bloodwork results and everything else seems to be fine, medically speaking.

So my questions for any who have had a similar experience:

1) Are new intolerances ever temporary? Because this low FODMAP stuff is for the birds.

2) Has anyone ever found their problems that developed after going gluten-free to be so much more burdensome that they just scrapped the diet?

3) Any hints or ideas for things to explore / possibly provide relief are so appreciated.

Sorry to be so lengthy (and whiny).

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Many of us felt worse before we felt better. I would say you are experiencing withdrawl symptoms. It can take a long time to recover. Hang in there, because I am 3 months into it and usually not foggy. Others assure in their posts that things do get better. Your body is working hard just now.

DT

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Don't be sorry for the rant, we all need them now and again. I'm new to this too, only diagnosed 6 weeks ago. I understand your pain right now. Literally I'm on the loo in pain right now. TMI I know but this is life.

My brain fog comes and goes but it's starting to lift.

Hang in there. Just remember what your feeling now is your body trying to correct what was caused by the gluten and it will eventually ease.

Do not start eating gluten again because eventually you will have to stop again and go through all this again.

Remember it will get better

It will get better.

Love and light

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Kam43,

Don't feel bad for venting...most of us can understand the need to do so...you're among "friends" here when it comes to that! :)

1) From all that I've been reading, yes, many new food intolerances are discovered and are temporary. I'm only 3 weeks in and haven't come across any (yet...lol)...but, I've, also, been pretty restrictive.

2) The truth is that there probably have... But, I would guess that for those who have "scrapped the diet" were probably asymptomatic. Just remember that this will never just go away! If you give up, you will only harm yourself and, possibly, bring on worse conditions by doing so. Please read and learn some of the devastating effects of that from some of the folks here.

3) Unfortunately, I can only say that patience is probably what you will need most...while you are healing and reversing the effects... Time is the answer, it seems...

Btw, I've never heard of FODMAP...what is it? Also, do you have any guidance on your diet (dietician, etc). Just curious... :)

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Don't feel bad about venting! We all end up there at some point and it's at that point when we usually go looking for help.

To answer your questions 1. While I have not personally had experience with food interference I have seen many here talk about them coming and going so they can certainly be temporary. I wouldn't be too worried this early about it yet.

2. Yes, I'm sure many have scrapped the diet. Before you consider things like this consider the consequences. First, it's possible that the immediate side effects won't be the same as they were when you were previously ingesting gluten. Then, there are other things to consider. Members here can share horror stories. One is more or less crippled over a single accidental ingestion of gluten. Many were on death's doorstep when they went gluten free. Many have been hospitalized and near death over accidental ingestion of gluten. Many have lost loved ones over this disease. An obituary in April of this year listed the cause of death of a woman as celiac, this disease is by itself deadly. There are dozens of diseases that it can cause, from things that are merely annoying to things that will kill you to things that will make you wish they were killing you. These can all be avoided by a strict gluten free diet.

Okay okay, I'm done with the lecture. I know, it's annoying. It's hard. It SUUUUUUCKS! I won't lie, it dies. It also gets easier with time and practice. I'm not trying to browbeat you, I'm just trying to make sure that it hits home that it isn't okay to look back.

3. Try this linkfor some helpful hints that you may find helpful. You may find that with the symptoms you are having that there are some tips here that will help you out. You'll also find some great dinner and recipe ideas in the dinner/breakfast/lunch threads in the baking/cooking section. It never has to be fancy. Lots of people here live with lots of different restrictions and I'm sure you'll find lots of help in that department.

I'm not particularly familiar with FODMAP but I'm sure that there is something included that is crockpot appropriate. When I am just not up to recipes and cooking, I break out the trusty old slow cooker, throw in a hunk of meat and some veggies and turn it on. You can freeze leftovers in reasonable portions and have food for a week (or two if it's a huge cooker) and not have to worry about cooking unless you're up to it.

I also rarely say this because packaged foods are how I kept my sanity at first, but with your increased symptoms it is probably a good idea to stay away from them until you're feeling better.

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Welcome!

No need to apologize - this is the perfect place to vent.

I've had similar experience except that I had severe digestive issues prior to diagnosis along with muscle/joint pain, severe fatigue, etc. The only thing that improved for me during the first seven months was my digestive symptoms. My pain, fatigue, brain fog and more became much worse. I spent well over a year trying to remove one item at a time from my diet and never really got any firm answers until I removed all lectins (Dairy, Grains, Legumes, Nuts, Seeds and Nightshades) for a couple weeks then trialed one food item at a time every three days. I improved right away after removing all those items plus citrus as it was already bothering my gut. The results of the food trial were amazing...nearly every food caused different symptoms.

You are so close to an elimination diet already. Meat, vegies and fruit may help. It is hard but if it leads to health - totally worth it. If you go back to eating a full diet at this point, you won't necessarily go back to your lack of digestive symptoms with pain only as before diagnosis and would be causing serious damage to your body and will become even more ill over time. The undiagnosed celiac disease likely was causing your pain - your other symptoms are common. I was diagnosed with Fibromyalgia at 7 months gluten-free. I firmly believe that the fibro symptoms are caused by the undiagnosed celiac disease - the celiac damages the gut, making it difficult to absorb the nutrients needed to run all types of processes within the body. I had major improvement supplementing amino acids right after fibro diagnosis - in hind sight had I already removed all my food intolerances this would have likely worked better.

So back to your questions:

1) Are new intolerances ever temporary?

Yes, there are many folks that have been able to add foods back into their diets and usually post that information here -- it continues to give me hope that I will get foods back one day each time I hear read one of those posts.

2) Has anyone ever found their problems that developed after going gluten-free to be so much more burdensome that they just scrapped the diet?

Yes, I am sure there are - my Celiac Doctor has indicated that he has patients whom are non-complient to gluten-free diet if they didn't have digestive symptoms. Not a great idea, but completely understand the thought of giving up and eating everything ;)

3) Any hints or ideas for things to explore / possibly provide relief are so appreciated.

- have your vitamins/minerals been checked? Bs, D, K, Iron, Ferritin, Copper, Zinc. You likely need to supplement during healing - good multi minimally, likely B Complex and more. Check out amino acids and malic acid related to fibromyalgia - could help.

- probiotic? Is essential to newly diagnosed -- I stopped taking mine sometime during the the past few years and believe it may have led to further digestive issues. I am back on them and will be for a long time if not always.

- consider full elimination, don't forget nightshades (tomato, peppers, potatoes, eggplant) as they can cause some of the symptoms you have. Finding and removing all food intolerance is the first step to becoming one of the folks adding items back into their diet - it can take a long time, but it does happen.

- exercise -- even just walking short distances if you aren't already can help.

- epsom salt soak for muscles and helps with itching -- don't think you had any itching, but I ended up with some itching during trialing of foods on elimination diet, generally the baths just started the day and often ended the day better.

You'll likely get more great ideas, but don't be afraid to ask more questions and/or vent right here - I've always received great input from everyone here.

Hang in there :)

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YES, I wound up with many many other intolerances during the first year. The one I was most sensitive to was corn and I truly believed I would never be able to eat corn again. But it seems I have gotten corn back now.

What you need is time. It isn't easy to give up the foods you love, especially when it seems to make you feel worse instead of better. But if you give it enough time you will start to feel better than you ever have, and you will get most of those foods back.

I was living on meat, broccoli, cauliflower, cheese, eggs and bananas. That was IT. And it seemed like every time I turned around something else was going wrong. During the healing process, my almost non-existant digestive problems became worse, my total lack of energy and brain fog became almost debilitating.

But now, a year later I have been able to add a bunch of new foods to my diet, and I feel SO much better. A year of misery and nothing good to eat was well worth it to get me to the point I am at now.

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I'm sorta in the same situation as you kam43, trying to figure out how to get better.

Been gluten-free and dairy free 2 months now. No apparent screw ups with gluten, one mess up with dairy.

Things that are better: Little/no bloating, near constant pain that was on lmy eft abdomen is now rare and very mild.

Things that aren't better: Mental aspects like mood, brain fog, and fatigue

Things that are worse!: pain and tingling in extremities, everyday I seem closer to actually having what I would diarrhea, and I get headaches often now. (I think I can explain the headaches via having too much tyramine, especially since I've replaced milk with almond milk, and nuts are supposed be somewhat high in tyramine, and especially since even as a happy, healthy kid, I knew that eating too many pickles with aged cheddar gave me headaches...gawd what a yummy combo! Anyone who can eat dairy I recommend snacking on pickles and old cheddar or pickles and havarti.)

-I'm nearly certain ALL dairy bothers me, not just lactose. That's definitely something you should look into.

I am trying to be corn free for at least a few weeks (it's hard...I think I'm going to have be brushing my teeth with soda and water!)

I am hopeful that those sensitivities, if they truly are sensititivies, will go away, but I'm dubious about those. Only time will tell

But even if the dairy and corn doesn't work out, there's a lot of things left I can try still:

-I haven't tried a low fructose diet, but again, my bloating is better, so I'm not too concerned there.

-I tried taking probiotics until I realized that all the ones I can find definitely have dairy or will not say if they are dairy free. I'm not sure any lactobacillus bacteria are dairy free. In any case, I DO get diarrhea when I take the couple brands I've tried, which is consistent with a symptoms I have when I have lactose free dairy.

-I haven't tried to not include nightshades

-I am still using gluten free flours in baking and cooking, although I'm not eating store made confections or breads (except for sandwiches once these past 2 months), and I know that many people feel better simply stopping all grains.

There are always things to try! If push comes to shove, I'll fast for a week, and then add a new food each week to really try and pinpoint what bothers me. And even if I actually find that NOTHING really affects me doing that (well I won't try eating gluten regardless), then I will be fairly assured that all my symptoms are just nutritional deficiencies which means I just need more time to start feeling better.

As to you not being so happy, if it makes you feel better, I've heard (haven't really done any proper reading into it though, so don't trust me!) that wheat and dairy actually affects our opiate pathways, so the fact that you're not as happy might be more of a drug-ish reaction than anything else. (And I am certain that withdrawal from opiod drugs like morphine or oxycontin can be incredibly hard.)

Don't give up. Healing takes time.

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And, truly, I can't emphasize enough how strictly I'm following the diet - all kitchen items replaced, very infrequently dining out at and always at locations with gluten-free menus and accommodating managers. I am taking vitamins in response to bloodwork results and everything else seems to be fine, medically speaking.

You seem to be on top of the diet requirements but I just want to mention a couple of things. If you have done these things already, then maybe it will help somebody else following the thread.

Have you checked all your medication/supplements? Simple things can trip us up. I bought advil gel caps recommended by my TMJ doc because they are faster acting. I knew that advil was gluten free. . . but wait . . . the advil gel caps are not!!!

Check toiletry items. Some people can handle wheat germ oil in their shampoo, but I don't trust my daughter to keep it out of her mouth. Plus, does it leave a residue on your hair (once again, I don't know) that can then be transferred to your hands (I'm constantly tucking my hair behind my ears)? Some lipsticks have gluten . . . definitely a no-no. Stuff like that.

The other thing that comes to mind is "pre-contaminated" items in your kitchen. I know when I baked prior to my daughter's diagnosis, I would use the same measuring cup to measure (wheat) flour then tap it against the bowl to knock off the dust and use the same measuring cup to scoop out sugar, thus, contaminating my sugar canister. Items that you would have doubled-dipped like peanut butter and jelly that could now have crumbs in. I know you started a while back and if your house is anythig like ours, peanut butter and jelly has a high turnover rate . . . but that was just an example to get you thinking if there might be something in your fridge or pantry that you used before diagnosis and are still using.

The only other suggestion I have is to try a good(gluten free)digestive enzyme. That has helped my daughter recover more than anything else.

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Thanks everyone for the replies. Yes, I've definitely seen the recurring patience theme but my stars, it's just starting to seem crazy! I'll try to address everything that's been brought up thus far.

justlisa - low FODMAP removes things that are known to be buggers in fructose malabsorption and is a diet often recommended to IBS patients. I had seen a lot of Celiacs here and elsewhere mention it as a way to combat bloating issues. This site is a pretty good resource.

Adalaide - thank you for #2. And your point on packaged foods is echoed - I gave those up in week 2 so now, 7 months in, I'd be really happy to NOT make a snack of my own. :)

GottaSki - thank you for #3 but, yep, all of those things are already addressed. I take supps appropriate to vitamin workups, probiotics, and walking is all I can do so I do a 1 hour walk pretty much daily.

bartfull - so jealous that you get to have eggs! Those turned on me about 4 months ago and I would do nearly anything for a slice of frittata.

cavernio - i'm already no dairy, no corn - really it's meat, veg and low FODMAP appropriate fruit. Oh, and the occasional 1/4 of quinoa, you know, if I'm feeling like a treat. :) I sincerely hope what I'm experiencing isn't still withdrawl. That made sense for the first couple of weeks but it's been 7 months and I really didn't eat much gluten before as I had been living very low carb for 6 years up to diagnosis.

Darn210 - thanks, yes, all supps verified gluten-free. I've also replaced all toiletry items that touch my mouth and things that I worry could "rub" (like body lotion, if you didn't manage to wash it all off your hands). And when I said all kitchen things replaced, I actually meant ALL. My dietician had me so terrified about cross-contamination that if I couldn't determine something to be 100% properly dishwashable to safety, then it was gone. Measuring cups with the little indent where the handle joins included. My closest girlfriends and I had a de-gluten the kitchen party where they had to help scrub down cabinets and counters and in return, all of my kitchen wares were offered to good homes. :)

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:) I was Dx 20 months ago with Celiac Disease, been gluten free since. Was doing so well I finally was able to get back to work. After 4 days started having severe joint & muscle pain & fatigue. Read all these post in my search for and answer & got it. Just because I was working again I started cooking easy quick meals. Tomato based sauces, baked or mashed potatoes and started eating corn again ( have not been off corn very long but noted difference in my recovery when removing it). I just plain forgot. I wish to thank all of you for helping me get back on track. I just hope it does not take long to get back to filling well again. I will now cook better meals & do enough to freeze so as to have that quick easy meal after a day at work. Thanks for being here!!!! :)

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I also know how hard it is to be so limited by what your body will tolerate. I'm in the same boat right now. I stopped gluten months ago, but have developed more intolerances since. I can only eat fruit, veg, nuts, and beans, that's it! Everything else makes me sick. I realize now I will have to wait at least 6 months before I try to add any other foods back in.

Just know that you will get better! It will take time, but it's amazing how strong you can get with time and learn to endure. You are basically in boot camp right now, and the rewards will be feeling good again, better than you did before even. I have some really good days, and that's when I see what I have to look forward to. It's hard when the worst days come. You may feel like you are on a rollercoaster at times. Good days and bad days. That's normal.

I recommend keeping track of any dates you make changes to your diet and your symptoms on a calendar, so you can look back and see your progress. If I hadn't, I never would have realized how far I've come. It all starts to blur together, and seem like it's taking longer than it really is, especially with the brain fog aspect of it.

You'll learn a lot from everyone on this site, and find more and more tools to put in your bag of tricks. In the meantime, vent away! Don't give up though, or you'll just lose time and be back here at the beginning again. It may not feel like it, but you're healing already! It does get better.

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Please understand..."scrapping the diet" is not an option. If you return to eating gluten, you will become very ill and likely develop lymphoma. Your life depends on this being a permanent change.

That said, I know it must be very frustrating to feel worse now. I got huge relief after my dx and going gluten-free, but my daughter is more like you. A year and a half later, we are still struggling to nail it down, and she has more bad days than good. But there is no other option but to keep trying. Knowing the difference being gluten-free made in my life makes me work harder for her because I know what a properly functioning body feels like now! Feeling good is SO great, and I really believe it is attainable for you. I wish I had more specific advice, but you already received that. Just know you aren't alone and that you have found a great group of people to support you through this!

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Hi Kam,

Some people do get the ability to eat certain foods back. Dairy is a common one. Celiac destroys the villi lining the small intestine that make the lactase enzyme that digests dairy sugar (lactose). So after you heal it is possible that enzyme will be produced again and dairy will be ok. Some of us develop a reaction to casein,the protein in dairy. and that tends not to go away.

Often enough it seems like the gut is reacting to a whole lot of foods, when it may just be that it is inflamed and reacts when anything hits it. Those kinds of reations can decrease or go away with time and healing. Some studies show healing can take up to 18 months. But healing will be slowed if you are eating foods that case a reactions. So it is good to really simplify your diet for a while to prevent irritating your gut. There is nothing wrong with meats, nuts, and veggies for a diet. Those are all good food. The trick is that someitme sour bodies develop intolerances to certain foods and even good foods can be a problem. So an eliminaiton diet may be needed if things don't get better in 6 months.

Scrapping the gluten-free diet is a bad idea and you can see why by reading the cheating thread. Yes, some people have done it and they paid a heavy price for doing so.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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So my questions for any who have had a similar experience:

1) Are new intolerances ever temporary? Because this low FODMAP stuff is for the birds.

2) Has anyone ever found their problems that developed after going gluten-free to be so much more burdensome that they just scrapped the diet?

3) Any hints or ideas for things to explore / possibly provide relief are so appreciated.

Sorry to be so lengthy (and whiny).

Venting I get I do it my self, whiny you are "talking " to the queen of whiny :P Giving up is not an option.

1) yes, I have added back many things I was intolerance of including

eggs,dairy,limited nightshades just to mention a couple .

2)No ,Giving up is not an option. Cancer,gluten ataxia, death are a h**l of a lot worse than a gluten free diet and the drama/trauma of healing.

At one point in my recovery I was limited to white rice and ground lamb. Nothing else for 2-3 months , then the fun started(sarcasm) I got to add each food back ,one by one , to see if I retracted or not .

.Then of course if I retracted I had to recover so I could start all over again :ph34r:

3 Have you done a strict elimination diet?

I am jealous you get to eat quinoa ,my belly wont let me ( whine )

I just reread your post. It has only been 7 months?

7 or 8 months in to being gluten free was when the other intolerances started showing up for me.

Edited by a1956chill

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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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