gluten-free For 6 Years, Worse Than Ever. Help! New Person Here: )

[gluteymommy]

Hello everyone! I’d like to introduce myself to this forum, and it is about time. I have been lurking around here for the past 6+ years: ) I am basically at my wits end and in need of some advice.

To give you some background, I was diagnosed with Celiac disease about 6 ½ years ago through blood work and biopsy. My symptoms prior to diagnosis were bloating and C, insomnia, recurrent sinus infections, itching all over, and the list probably goes on. Anyhow, after diagnosis I went straight to a religious gluten-free diet. When I say religious, I mean every item was checked with the company, new dishes and utensils, body care items. I was expecting to feel better. However, I actually felt worse for a long time. When I say worse I mean fatigue, mood issues, aches and pains, sleep problems etc. On top of that I developed DH skin rash about a year after I was diagnosed.

During the past 6 ½ years I have meted out that I am a super, super sensitive celiac. I also have some other food sensitivities that I have discovered. I eat very little in the way of processed foods, and only those that I am sure I can tolerate after years of maddening, extensive “food testing” on myself. However, all of this has only partially helped.

I am only 36, but I feel my health has been on a downward spiral for the past 8 years or so. After having the most beautiful little baby in the world 18 months ago things have only gotten worse. I have recently been diagnosed with scarring alopecia; an autoimmune disease which causes permanent, progressive hair loss. This has been extremely devastating for me to say the least. Also, my primary physician is now referring me to a rheumatologist because she feels I may have fibromyalgia, but no one is really sure. I seem to have many of the symptoms of fibromyalgia including body aches, headaches, sleep problems, and numerous chemical sensitivities. The chemical sensitivities are so bad that I can’t even take a multi-vitamin at this point without a flare-up of symptoms. I haven’t really accepted the fibromyalgia diagnosis yet since I think something deeper, possibly food related? may be going on with me.

I also have sensitive skin, constant chapped lips, thinning, brittle hair and I struggle with anxiety and depression issues. I was tested for thyroid imbalance including antibodies and screening for Hashimoto’s. All tests came back within perfect range.

I have done a lot of research on leaky gut, and think maybe this is an underlying problem for me but not really sure. Several months ago I tried the Specific Carbohydrate diet for 30 days. I was hoping this would be my magical cure, but I only felt worse. My fatigue, insomnia and body aches increased immensely during this time despite eating 2000 calories a day. I had to discontinue the diet because I couldn’t function. I am now trying eliminating grains again and basically eating paleo autoimmune. I am in week 2 and I was sort of feeling better but last night I ate a huge helping of homemade kale chips. After eating that my stomach bloated up and My fibro-like symptoms flared up. I couldn't sleep and I feel like hell today! Is there such thing as a kale intolerance?? Geez. I'm starting to feel like nothing can help me and I'm intolerant to everything!!! I don't know what to eat anymore.I’ve also tried numerous supplements such as EFA’s and vitamin d but my body seems unable to tolerate or process these things and I just feel worse.

Sooooo…just wondering/hoping any of you might have some insight into how I can feel better, since it seems many on here have similar issues? Maybe my issues are not food related and I'm barking up the wrong tree? I’ve apparently baffled my doctor and I haven’t yet gone the naturopath route since I can’t really afford it. I want my life back and I don’t want to feel sick every single day. If I hear one more story about how simply eliminating gluten will bring about perfect health I might scream! This has not been the case for me. Anyhow, glad to meet you all, and any insight would be much appreciated. Thanks!!

[shadowicewolf]

What about soy and dairy? Are you okay with those?

[gluteymommy]

What about soy and dairy? Are you okay with those?

Hi! I am avoiding both right now. I suspect a soy issue but not really sure because I rarely eat soy anyway. I have avoided milk for years but have been ok with cheese. I have cut out all dairy for the time being.

[bartfull]

Have you had your vitamin levels checked? It sounds like you might be deficient, especially seeing vitamin polls don't ahree with you. And BECAUSE they don't agree with you, I am suspecting corn. That is what most pills use as a filler.

[jststric]

From my own experience, nothing will be seem better till a leaky gut is healed. I found a gluten-free/allergen free vitamin/mineral place online at kirkmanlabs.com. I still use their Lactobacillus Acidophilus probiotics because dairy use to be a bigger issue for me when I discovered my gluten-intolerance also. So my doctor's suggestion of eating yogurt was not helpful. But I would take the pills in the morning and at night, both, for a few weeks. After awhile, I felt better and my digestion was clearly getting better. I would also make sure all your vitamins and such ARE glutenfree. As for the kale chips....did you use olive oil or spray oil? Did you know some spray oils have wheat in them?? Check yours. I suspect you are missing glutens and other foods that have become a bother to you. When I first started making my list...it seemed to go on and on. I ended up with a list of glutens, dairy, nuts, eggs, beans, rice. IN TIME, I have gotten the eggs back, SOME dairy with the help of lactose-free milk, SOME rice and SOME beans. The glutens and nuts seem to be my mainstays. Keep looking at your ingredients on EVERYTHING. ALL the time! Also look for those magic words, "....processed in a facility that also handles....." . THAT tells ME no-no. Best wishes!

[gluteymommy]

bartful, my vitamin d is low which I found out through testing but I am unable to tolerate even a small amount, I'm not sure why so this is probably adding to my health issues. jstric, I know repeated glutenings(from things that are supposed to be safe) have been an ongoing issue for me. I am eating only whole foods now. Do you think the probiotics helped any leaky gut issues you had? Thanks!

[Juliebove]

I was diagnosed with Fibromyalgia.  I know some will dispute this but I believe it is only a symptom.  In my case it was a thyroid symptom.  Mine was at the worst when I was hyperthyroid and I was hyperthyroid only because my idiotic Endo. kept me on a high dose of thyriod meds that as it turns out, I did not need.

 

I still get the occasional Fibro flare but it is not nearly like it used to be.  Used to be a full two weeks at least to get over it.  Now maybe 2-3 days.  And if I am careful and don't overdo anything, I won't get the flare.  But for me it is super easy to overdo.  I can't do much at a stretch and I must sit down, rest and have a cold drink. 

 

I still do have one Fibro symptom and that is a reset body clock.  I stay up all night and go to bed in the morning.  Thyroid is not perfect.  I still do have a goiter.

[dilettantesteph]

I think that I am also sensitive to extremely low levels of gluten.  So is my son.  I can't believe all the things to which I react.  Could all those things really be contaminated?  Yet, when I grow them myself in my garden, I don't react.  Certain items I can still buy.  I freeze and can and grow.  I read recommendations for items that other sensitive people say that they tolerate and try those.  I try to introduce new items by trying a very small amount the first time.  Then I wait a couple of days and try more if I tolerated it.  Then I have it every day for a week.  Every once in awhile I actually find a new food that works.  Other than that, I keep adding garden beds.  It may be crazy, but it works.  I'm doing great these days except for when I try something new.

[jststric]

Yes, the probiotics, taking high doses over a period of time, healed my leaky gut. The type I take are "3.0 Billion CFU's per capsule". I took one in the morning and one at night. I still take them. I've read that gluten issues "leech", or suck, vitamins/minerals and our "villi" is always going to be struggling to keep up. Vit. D is one of those. I'm not at all an outside kind of person, so I take extra D in pill form. But they say 10 minutes in the sunlight is good for a day's D. And I help my "villi" by taking the lactobacillus acidophilus. I would suggest the next time you go to the doctor and have blood drawn to ask them to do a work up on your vitamin/mineral levels and then find ways to boost those. 

 

One more question....I went back and scanned your post again. Is there, by chance, a non-glutenfree person in your household? I'm the only gluten-intolerant person in my household (at the moment). MOST of my cooking is just whole foods, naturally glutenfree. But occasionally I fix things that I do both....glutenfree AND normal. Like spaghetti nights or something. And they do for themselves all the time in MY kitchen, lol. They TRY hard to be aware but I've seen them lapse in remembering things I need for a non-contaminated work area. So I'm vigilant about washing down my counters and surfaces they touch A LOT. 

[gluteymommy]

Thanks everyone! Dilettantsteph, I know I am super insanely sensitive and I'm starting to accept that I cannot eat processed foods at all. I think even the few I was eating have kept me ill all of these years. Also cc in rice perhaps? Jstric, good to hear about the probiotics, I will be researching which ones I can take. Thanks again

[dilettantesteph]

I think that I am having problems with cc in rice.  I might just have a problem with rice, but it is less severe when I wash it like crazy.  I did better with rice from Thailand, but still had symptoms.   I have another rice coming from another source next week and I'm keeping my fingers crossed.

 

The probiotic I take is Align and it's discussed here: https://www.celiac.com/forums/topic/100515-celiac-and-align-probiotic-does-anyone-take-it-side-effects/

There is an actual study, though small,  to show that it is effective and it doesn't gluten me.

 

Insanely sensitive is a good way to describe my level of sensitivity too.

[gluteymommy]

Thanks, For the recommendation about Align: )

[foam]

gluteymommy, just about vitamin D. Vit D is one of the major factors in balancing your immune system (T cells). The problem is if you take bulk amounts of Vitamin D it will push your immune system towards the inflammatory side almost instantly and it'll keep doing that until you have enough vitamin D to balance the T cell maturation. I find real sunlight to be much more tolerable so try if you can to do proper sunbathing and get your levels up as high as possible doing that. Then after that top up with the supplements.

 

Sunlight will also help greatly with your itching and general breaking down of toxins. Lack of vitamin D is also the major cause of depression so all up I think that's where you need to put your focus first. 

[cyclinglady]

gluteymommy, just about vitamin D. Vit D is one of the major factors in balancing your immune system (T cells). The problem is if you take bulk amounts of Vitamin D it will push your immune system towards the inflammatory side almost instantly and it'll keep doing that until you have enough vitamin D to balance the T cell maturation. I find real sunlight to be much more tolerable so try if you can to do proper sunbathing and get your levels up as high as possible doing that. Then after that top up with the supplements.

Sunlight will also help greatly with your itching and general breaking down of toxins. Lack of vitamin D is also the major cause of depression so all up I think that's where you need to put your focus first.

[dilettantesteph]

 

Sunlight will also help greatly with your itching and general breaking down of toxins. Lack of vitamin D is also the major cause of depression so all up I think that's where you need to put your focus first. 

 

Do you have a reference for sunlight breaking down toxins?

[carolynmay]

Try cutting out all GMOs, including meat, eggs and dairy with animals fed from them.  At least one brand of GM corn has a pesticide inserted into it.  I am personally sure that in years to come people are going to realise that ingesting foods with a pesticide inserted into the DNA are really not good news for those who already have compromised gut bacteria.

[dilettantesteph]

Lots of plants that we eat everyday have pesticides in them naturally.  You can read up about it.  Whether or not adding them purposefully is harmful is up for debate.  It is hard to prove a negative.

[ValeriaZ]

Looks like other food intolerances and vitamin B group deficiency

 

Most important being B3 and B5.

 

Those just saved me (but very high doses)

 

Take care

[lihaoqing]

you sounded really like me, i am boggled with the fact that i seems reacting to every food, and having trouble to keep my weight up. it was frustrating to acknowledge the fact that you can't savor any of the delicious food other people do. but there is no cure other than to find out the food you are most comfortable with and stick to it, not even thinking about venture into trying other things  for me it's rice, the simple grain, however i am really sensitive, different rice i can react differently. but i know it's already the best i can got, it supply me with the energy to get by.  when comes to rice, pick those without nutrional enrichment, so that comes down most calrose rice from california and imported rice from thailand and india. 

i have tried lots of supplement which will only make things worse, since it will certainly trigger some immune response because of its artificial systhesis component, i have tried l-glutamine, digetive ezyme and vitamines probiotic, none works, so forget it, we don't even need it, supplement are the fancy invention of modern world which doesn't have much practical use much at all  people who said supplement works are those whose level of severity of sensitive is not high enough. think about it if your body rejects natural food, will they happily accept something foreign and full of artificial ingredient?

 

i have tried eating red meat or fish, but that just trouble me more. i thought those meats first is hard to digest, second they are more likely to cause immune problem. paleo diet is the most ridicilous thing ever. it may work for people who want weight loss or thought it was cool, but other than that, it will just kill a otherwise healthy person. we need grain for a reason.  our brain won't function and handle the intensitive and load of modern work without carb. it transform us from cave men to a highly intelligent species. all the elite people of our society are eating high carb diet,  altheltes, scientists, so are the digestive weak people who finds carb to be most easy absorbable source of energy. for me if i didn't have rice everyday, my weight will drop to a scary low level, simple fact, we need grain, ignore all the paleo none sense. 

avoiding all the cooking oil, that's the trouble maker for me too. i tried all cooking oil, all will make me feel like death. especially soybean oil. that's why i never eat out, the cooking oil is devil, my fat source is only chicken fat, which from chicken my only comfortable meat to eat. 

so my diet is chicken and rice and some veigge like onion pepper, i tried to avoid leafy veggie like kale which makes me sick too.  i think that's the diet which i can benefit most from.  right now at least i feel much more energy than i used to.

i can relate to your feeling,ibecause of gluten, i lost lots of hair, i had growing problem, brain function problem, fatigue, depression, social problem, my weight loss so severe, my organ is damaged and has to be hospitalised. gluten free for two years.  most of the time, i will question why i am not able to eat like normal person, why my body is so sensitive. but sadly you are born with it. nothing can change it. i am fortunte to live another day. you only live once, so make every day count.  find what suit you the best and don't get too fancy. don't worry about nutrional difficiency, trust me if you can find your source of carb like rice, protein like chicken and some veggie don't have to be too much, you will be perfectly healthy. only thing will cause healthy problem is putting the wrong food or tons of supplement which irritates the body and negatively impacted you.

hope that help, and stay positive, i am willing to share more if you would like, after all i thought we are pretty close in sensitivity.

[squirmingitch]

Have you had an endoscopy since your original one? That would be something to look at & see what's actually going on in there -- how your villi are doing.....

[1desperateladysaved]

I think you may be on to something with Grain free.  I have been on the SCD diet (Or similar) for several months and this helped me.   It was created for people that have not responded to a gluten free diet. Supplements have been life saving for me.  I try to get ones that are simply powder of what I need.  I do have  several bottles of ones that I have reacted to and avoid, I use them for compost.   I found probiotics and CoEnzyme Q 10 in powder.  You do have to watch for corn in them.  Someone who is well versed in corn avoidance may help here, I think sometimes corn's derivatives are listed..

 

I think a garden is very important for this situation.  I especially feel this way after reacting to cauliflower recently.  My belly swelled noticeably, I had appetite loss for 2 days and felt mostly better after 3 days.  I would say this is super-sensitive.  At any rate broccoli is in the same family as cauliflower and I haven't reacted to home grown or a certain brand that is packaged in a vegetable facility.

 

I would be willing to talk about super-sensitivity.

 

You must never eat gluten.  Also, watch out for cross contamination. 

 

D

[T.H.]

This may be a shot in the dark, but did your doctors ever check you for mast cell activation disorder(MCAD) or mastocytosis?  

 

I was recently diagnosed with this, and a lot of my experience resembles your own. My symptoms grew worse after going gluten free, although I eventually found a way to improve them, I just didn't fully understand why. I had to go 'super' gluten free or I would just bite the dust. Found other food intolerances and had to avoid those. Started reacting to chemicals in a big way and had to avoid those, too. Yeah, supplements kick my butt. I can't take them either.

 

I would keep finding things to make it better, and then it would start to get worse again and no doctors could figure it out until I finally got tested for MCAD and had it - and it was just a set of urine and blood tests, but it had to be the right ones, is all. 

 

Both conditions are where the body's mast cells - which degranulate and cause the symptoms of an allergic reaction - react abnormally and trigger an allergic reaction to all sorts of things that you wouldn't normally be able to.  In the past, mastocytosis was recognized more by those who would go into anaphylactic shock all the time but tested negative for allergies.

 

However, MCAD, which is much more recently recognized, is actually more when the body's mast cells can either release everything at once (causing anaphylactic shock) or they can slowly 'leak' the contents out and cause ongoing, chronic problems, but not necessarily symptoms that you'd take to be an allergic reaction. Some of these can be inflammation, rashes, itching all over, gut and bowel issues of all kinds, fatigue, bone and joint aches, muscle aches, hair loss, exhaustion, headaches, anxiety and depression, insomnia, and so on. Things like chapped lips or mild dehydration are common because the body's response also results in loss of fluids into the tissues as the body reacts.

 

People with this condition have 'triggers' that trigger the mast cells, and aside from foods and hay fever type allergens, chemicals are some of the most common triggers. Some doctors believe that many people diagnosed with multiple chemical sensitivity may actually have mast cell disorders, instead. Most people I've met with this eat almost no processed foods at all. And a much higher number of them than the regular population are either gluten intolerant or celiac.

 

If you want to explore this, the best information I've found is on facebook support groups. You can find a few if you look up MCAD, mast cell, mastocytosis, or mast disorder.  These groups have some great files with lots of technical information on how to get tested, symptoms, treatments, all sorts of things.

 

And if you wish to get tested, you may need this, because many doctors don't even know how to test for this, let alone what the symptoms are. I currently have a 7 page packet to give to anyone in the ER if I'm ever taken in, and about 2 pages are instructions for the doctors on do's and don't's, because they are so unlikely to know about it. 

 

It truly does seem like it might be worth exploring, at the very least.  Wishing you good luck, and feel free to PM me if you have any questions. 

 

 

Hello everyone! I’d like to introduce myself to this forum, and it is about time. I have been lurking around here for the past 6+ years: ) I am basically at my wits end and in need of some advice.
To give you some background, I was diagnosed with Celiac disease about 6 ½ years ago through blood work and biopsy. My symptoms prior to diagnosis were bloating and C, insomnia, recurrent sinus infections, itching all over, and the list probably goes on. Anyhow, after diagnosis I went straight to a religious gluten-free diet. When I say religious, I mean every item was checked with the company, new dishes and utensils, body care items. I was expecting to feel better. However, I actually felt worse for a long time. When I say worse I mean fatigue, mood issues, aches and pains, sleep problems etc. On top of that I developed DH skin rash about a year after I was diagnosed.
During the past 6 ½ years I have meted out that I am a super, super sensitive celiac. I also have some other food sensitivities that I have discovered. I eat very little in the way of processed foods, and only those that I am sure I can tolerate after years of maddening, extensive “food testing” on myself. However, all of this has only partially helped.
I am only 36, but I feel my health has been on a downward spiral for the past 8 years or so. After having the most beautiful little baby in the world 18 months ago things have only gotten worse. I have recently been diagnosed with scarring alopecia; an autoimmune disease which causes permanent, progressive hair loss. This has been extremely devastating for me to say the least. Also, my primary physician is now referring me to a rheumatologist because she feels I may have fibromyalgia, but no one is really sure. I seem to have many of the symptoms of fibromyalgia including body aches, headaches, sleep problems, and numerous chemical sensitivities. The chemical sensitivities are so bad that I can’t even take a multi-vitamin at this point without a flare-up of symptoms. I haven’t really accepted the fibromyalgia diagnosis yet since I think something deeper, possibly food related? may be going on with me.
I also have sensitive skin, constant chapped lips, thinning, brittle hair and I struggle with anxiety and depression issues. I was tested for thyroid imbalance including antibodies and screening for Hashimoto’s. All tests came back within perfect range.
I have done a lot of research on leaky gut, and think maybe this is an underlying problem for me but not really sure. Several months ago I tried the Specific Carbohydrate diet for 30 days. I was hoping this would be my magical cure, but I only felt worse. My fatigue, insomnia and body aches increased immensely during this time despite eating 2000 calories a day. I had to discontinue the diet because I couldn’t function. I am now trying eliminating grains again and basically eating paleo autoimmune. I am in week 2 and I was sort of feeling better but last night I ate a huge helping of homemade kale chips. After eating that my stomach bloated up and My fibro-like symptoms flared up. I couldn't sleep and I feel like hell today! Is there such thing as a kale intolerance?? Geez. I'm starting to feel like nothing can help me and I'm intolerant to everything!!! I don't know what to eat anymore.I’ve also tried numerous supplements such as EFA’s and vitamin d but my body seems unable to tolerate or process these things and I just feel worse.
Sooooo…just wondering/hoping any of you might have some insight into how I can feel better, since it seems many on here have similar issues? Maybe my issues are not food related and I'm barking up the wrong tree? I’ve apparently baffled my doctor and I haven’t yet gone the naturopath route since I can’t really afford it. I want my life back and I don’t want to feel sick every single day. If I hear one more story about how simply eliminating gluten will bring about perfect health I might scream! This has not been the case for me. Anyhow, glad to meet you all, and any insight would be much appreciated. Thanks!!

[gluteymommy]

Thanks everyone for your input! I am seeing my doctor next week and I am going to definitely ask to get a repeat endoscopy. I have not had one since my initial diagnosis which did show villous atrophy. Update, I ate a bowl of rice and beans yesterday for the first time in two months and I'm definitely having problems today. Looks like I will have to stay grain free. T.H., I got your p.m., thanks a lot. I am going to look at the FB groups you sent me, and find the info to get tested for this. Symptoms sound very familiar.

[pricklypear1971]

TH, I'm glad you've identified the problem. Phew, long road.

[ktylizbth]

Gluten free was not enough for me. It's taken starting on a low starch, grain free, dairy free, legume free, refined sugar free, nut free, low histamine, low fructose, nightshade free, candida diet. I've only started to notice improvement in about 3 months on this very strict diet because now I am able to eat starches like potatoes, bananas.

 

I think it is really slow process of getting the gut healed. For the first several weeks I was just having chicken broth everyday. I would cook the chicken in the crockpot for several hours. 

 

In the beginning I was just like you, I couldn't eat kale without being very bloated. It was terrible! Just eating raw vegetables made my stomach hurt I had to cook every vegetable.