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Seriously, Will It Ever Get Better?


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14 replies to this topic

#1 kam43

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Posted 31 July 2012 - 09:28 PM

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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#2 1desperateladysaved

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Posted 01 August 2012 - 03:49 AM

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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#3 troykm

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Posted 01 August 2012 - 04:29 AM

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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#4 justlisa

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Posted 01 August 2012 - 04:54 AM

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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#5 Adalaide

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Posted 01 August 2012 - 05:45 AM

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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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#6 GottaSki

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Posted 01 August 2012 - 06:49 AM

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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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 bartfull

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Posted 01 August 2012 - 07:44 AM

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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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 cavernio

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Posted 01 August 2012 - 08:12 AM

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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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#9 Darn210

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Posted 01 August 2012 - 08:15 AM

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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#10 kam43

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Posted 01 August 2012 - 09:28 AM

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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#11 Gail5

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Posted 19 August 2012 - 06:24 PM

:) 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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#12 FruitEnthusiast

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Posted 19 August 2012 - 07:15 PM

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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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#13 MitziG

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Posted 19 August 2012 - 07:44 PM

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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#14 GFinDC

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Posted 20 August 2012 - 09:54 AM

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.co...celiac-disease/

Newbie Info 101
http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article
http://www.nature.co...jg2012236a.html
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#15 a1956chill

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Posted 20 August 2012 - 10:25 AM

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, 20 August 2012 - 01:28 PM.

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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing



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