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Aphreal

I Think This Is Bigger Than Me Right Now.

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I am a fixer. I want to fix and it be fixed and be done with it. However, although I have made all my own foods gluten-free, I am still eating something that is hurting me. I am so much better than before... Headaches gone, Sleeping is somewhat normal now. Aches and pains gone, arthritic pain gone, most of the distension and ab pain is gone but I have marked episodes of significant D and gas. So I think back to what I ate before these episodes (they aren't even painful but when I gotta go... there BETTER be a potty nearby!) I thought maybe yeast. I had two big reactions after eating pizza (gluten-free mix... veggies, organic natural pepperoni and cheese, oh and hunts sauce) and Banana bread. Well the banana bread has no yeast so I guess that's not it. They also had different flours. I also had a hefty reaction after eating a bunch of corn products but the bread and pizza crust had no corn.

I was happy with my GI diagnosis via elimination diet but over the course of the past two weeks, I have had more D where as the first 2 weeks of gluten-free were awesome!

I wasn't going to get dr's involved but.. Ugh I want to cry.. I need to see what my allergies are. I mean what else do i do... eat nothing for a week then introduce ONE food at a time!?

I was very open and honest about all this with my GYN. I told her I need someone to listen and not just throw it up to IBS, I want to know what is causing it. How much damange it has done. I need this fixed. It's been decades. She knew exactly who to send me too. A GI that #1 is very hard to get into see because #2 she doesn't take for granted any DX you previously have but starts from scratch based on history of symptoms. I had a nice long talk with her nurse today. I think this may be the right move. The Dr sounds awesome.

I'm kinda worked up over this. My biggest fear is there is no detectable allergy and then I won't know where to turn.

Im sorry I am blubbering. I am tired (caring for my 16 yr old who had surgery), I am trying so hard to eat right but still getting sick. My husband's *sensitivity* radar has been failing too though I don't blame him too much. He works full time, in school AND coaching our sons Football team.

GRRRR do you ever feel like screaming? Did I mention we also have a son with a physical special need?

I feel like a boob.


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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Shesh that is long. Sorry :(


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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I am so sorry you are struggling - from all sides it sounds like. Hang in there!

I was wondering about supplements that you might be taking that may give you that sudden D. Too much Magnesium can do that to me, which, because I usually have constipation, I try to take just enough to be normal - not too loose but just right. But when I take too much magnesium - boy I got to go right now and it's liquid! :huh:

Plus another thought is that I've read that some of the "gluten free" flours are known to be contaminated with gluten. Have you tried to cut out everything except the meats, veggies and fruits you know you're not allergic to? It might not be an allergy at all.


I am self-diagnosed - tired of going to the doctor's offices for them to tell me that they don't know what's wrong with me. I have been told the bowel problems are IBS for over 15 years - "Eat more fiber" is their only suggestion. June 2009, decided on my own to eat grain free and focus my diet on mainly whole foods.

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I do understand how upsetting it is when you are a fix-it kind of person and you don't know what it is you are fixing.

The thing is, and I am not talking semantics here, that it may not be an allergy to anything, but just something(s) your system doesn't tolerate. And I know you will not want to hear this, but it has taken me 2-1/2 years to find out what all those things are for my body. But that's because I have lots, more than most people. Hopefully that will not be the case with you. From the pizza, it could possibly be the tomato sauce. That is one of my no-no's. Others here have problems with bananas. I also have problems with corn. You could potentially have problems with all three of these things. It is going to take some trial and error to find out. For example, one day eat tomato sauce and no corn and no bananas. Another day eat bananas and no corn or tomatoes. Eventually you will find out what things bother you, but you do have to do some dietary restrictions - perhaps the new doc can help you work out a proper elimination diet :).

Hang in there, stay the course, and this too shall pass. Try not to let it all overwhelm you {{{{hugs}}}}


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Your doing the right thing going in to see the doctor. If you haven't had an endo and colonoscopy those should have IMHO been the first things to have done along with the celiac panel and a full workup. You really need to get right back on gluten until you see the doctor. Make daily notes of what you are eating and the symptoms you are having including the timing of those symptoms. It might not help the doctor figure things out but it won't hurt. I am really sorry you are feeling so lousy and I hope the doctor can help you figure things out. When all is done with the doctor then give the diet another shot no matter what the results but when you do it again leave out the processed gluten free stuff for a couple months along with other processed foods. You may have other intolerances, you may have something else entirely going on or since you are early in the diet you may just not have healed enough to eat stuff like pizza with pepperoni and banana bread made with flours that your system isn't used to.

Good luck with the doctor and keep us posted on how your doing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks guys, I needed to get that out of my system. I feel better now. I think the best thing is to go back to meat, veggie,fruits and dairy as a base diet. I did that the first two weeks and I felt great. I then went nuts with gluten-free bread type stuff (I am a breadoholic) No wonder I don't know what it is!!

So I guess I better do that and get my bowel under control so I can at least go do stuff outside the house. I just hate feeling out of control or not knowing what is going on. I still think I need to see a Dr so that my condition is documented in case some kinda hell breaks loose.

I really appreciate having somewhere I can go to complain. Food is meant to be enjoyed, I feel betrayed. Is that weird?


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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Thanks guys, I needed to get that out of my system. I feel better now. I think the best thing is to go back to meat, veggie,fruits and dairy as a base diet. I did that the first two weeks and I felt great. I then went nuts with gluten-free bread type stuff (I am a breadoholic) No wonder I don't know what it is!!

So I guess I better do that and get my bowel under control so I can at least go do stuff outside the house. I just hate feeling out of control or not knowing what is going on. I still think I need to see a Dr so that my condition is documented in case some kinda hell breaks loose.

I really appreciate having somewhere I can go to complain. Food is meant to be enjoyed, I feel betrayed. Is that weird?

Just keep in mind that if you are already gluten free tests will be negative. It won't interfere with any other testing though. Since you felt great those first two weeks you are likely right that adding in all the gluten-free specialty stuff contributed to the problems.

I hope your back to feeling great soon. Do keep notes on your progress for the doctor if your not going back on gluten it may help her diagnose without the pain of a challenge.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks guys, I needed to get that out of my system. I feel better now. I think the best thing is to go back to meat, veggie,fruits and dairy as a base diet. I did that the first two weeks and I felt great. I then went nuts with gluten-free bread type stuff (I am a breadoholic) No wonder I don't know what it is!!

So I guess I better do that and get my bowel under control so I can at least go do stuff outside the house. I just hate feeling out of control or not knowing what is going on. I still think I need to see a Dr so that my condition is documented in case some kinda hell breaks loose.

I really appreciate having somewhere I can go to complain. Food is meant to be enjoyed, I feel betrayed. Is that weird?

Dairy is a problem for many people on this board. I can't recommend highly enough you try eliminating it for a while. I think you'll see much improvement. Although I still can't tolerate it, many people on here have been able to reintroduce it once their digestive tracks healed (usually a minimum of six months).

FYI, casein, the protein in milk, is often a problem for those who gluten intolerance.


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

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Raven, I am afraid to eat gluten but I understand why. What you say makes a ton of sense. I did try a bunch of new things all at once. Leave it to me to go overboard all at once.

I have had been tubed every which way from sunday. This was when I was 18 and they told me I had IBS and I also have a growth in my small intestine. It was never removed. Yes yes yes... I know what your going to say... TIME FOR ANOTHER! and you are right. I think I've been avoiding it.

Maybe I should call and talk to her nurse again....ask her about being gluten for a test or how this Dr does it.


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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I find it interesting that back when I was first DXed with IBS, I was put on the BRAT diet. Banana, Rice, Apples and Toast. I see many IBS misdiagnoses so eating little more than toast would throw a celiacs system into turmoil. Kinda crazy. Of course I didn't stick to it. I mean hello.. no protein at all, no dairy. I was starving!


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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Raven, I am afraid to eat gluten but I understand why. What you say makes a ton of sense. I did try a bunch of new things all at once. Leave it to me to go overboard all at once.

I have had been tubed every which way from sunday. This was when I was 18 and they told me I had IBS and I also have a growth in my small intestine. It was never removed. Yes yes yes... I know what your going to say... TIME FOR ANOTHER! and you are right. I think I've been avoiding it.

Maybe I should call and talk to her nurse again....ask her about being gluten for a test or how this Dr does it.

I think it's a good idea to call the office and speak to the nurse again and do go into detail. Don't be surprised if she has to call you back as she may want to speak to the doctor before giving you the answers. Do mention that on a previous endoscopy a growth was found but not removed. You may find yourself meeting the doctor for the first time in the procedure room. That happened to me with one of my GI's when a doctor called and demanded that I be scoped NOW. I left the office with a script for the prep and the procedure was done the next day. If they do want to scope I would let them. The prep for the colonoscopy is not pleasant but the two tests can rule out other more serious things that may be going on.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I wouldn't refuse. Ive been through the prep before and yea, it sucks. The GI said if they removed the exessive cell growth it may come back and not stop growing. Then again that was what 22 years ago. It may be some huge honkin tumor in there now.

Ever wanna just hide your head and pretend it's not there?


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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I don't think it's at all weird that you feel betrayed. I was just thinking today about something I read a while ago about how food is a constant in our lives - whatever else you going on, you still need to eat, so food is always there to provides comfort or creativity or sharing... Unless you're us, of course... :/

Hope you feel better soon. I'm going through similar things and this forum is such a help to me right now. Be well.


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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Gosh, just read that again and it sounds so depressing, I'm so sorry! I meant that recognizing this helped me understand some of my feelings about food lately, if that makes sense. I'm quite angry with food, I think.


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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This is only a thought, but did your pizza crust and banana bread have xanthan gum in them?

It can be a problem for some people. For me too much and the need for a toilet is sudden and urgent.

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Gosh, just read that again and it sounds so depressing, I'm so sorry! I meant that recognizing this helped me understand some of my feelings about food lately, if that makes sense. I'm quite angry with food, I think.

Don't get down on yourself. There is nothing to apologize for. There is a greiving process that many of us go through when we are struggling with this diet in the beginning. You have a right to be angry and to be sad also. You'll get through it in time and you are in a great place to vent those feelings.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I am very new to a gluten free diet and am definitely trying to figure out my food triggers too, but I agree with Miles that the Xantham Gum might be an issue. I figured out I was gluten intolerant when going on a vegan/wheat free diet for awhile. I felt wonderful but after a few weeks I started crashing so I had to start eating meat and eggs again in order to feel normal. Still having major joint pain...and I'm like you. I know it's just something I'm eating and oh Lord I just wish I could figure it out once and for all and get over this pain. So...maybe not too helpful except I can totally relate. Oh, and I guess I also second losing the dairy for a few weeks to see if it helps. To me it seems like a lot of people who have gluten intolerances/celiacs feel like they also have a problem with dairy. Good luck!

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Don't get down on yourself. There is nothing to apologize for. There is a greiving process that many of us go through when we are struggling with this diet in the beginning. You have a right to be angry and to be sad also. You'll get through it in time and you are in a great place to vent those feelings.

Thanks for this. You know, I didn't mind going gluten free because I thought it would make me better. I love food and I've made some pretty good food so far this year and hardly miss gluten at all. But now I feel like there's nothing that's good for me and just don't know what to eat, I'm really starting to feel it.


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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Thanks guys, I needed to get that out of my system. I feel better now. I think the best thing is to go back to meat, veggie,fruits and dairy as a base diet. I did that the first two weeks and I felt great. I then went nuts with gluten-free bread type stuff (I am a breadoholic) No wonder I don't know what it is!!

This really hit a chord with me, I went through the exact same process. First two weeks or so very strict gluten free, only meat, veggies, rice, potatoes, and I felt really great. Then I had a chance to investigate the health stores and got my fingers into the gluten-free starchy stuff, and now I'm back to feeling crap again, although still much better than before gluten-free.

I think corn turns into glue in my intestines :( And I suspect certain "gluten-free" flours are not so much...


Feb 2010 - Start of continuous GIT problems and panic attacks

July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms

July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem

*************************************************************

Gluten intolerant

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Yet another thought: do your gluten-free baked goods have tapioca flour or starch in them? That one usually upsets my GI. It's less of a problem now that my gut has healed (when I'm really craving a grilled cheese now I can usually tolerate a couple slices of Udi's) but when I first went gluten-free it took a bit to realize that the tapioca was setting me off.

Also, someone else mentioned dairy. I couldn't digest dairy at all for about two months after I went gluten-free. As my gut healed I was able to add back more and more and now I can even eat ice cream again (it used to make me really sick). You might want to try cutting out dairy for a bit and see if things calm down.

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It could also be soy. It's in a lot of the gluten-free baked goods. That one threw me for a loop. I had no idea I had a soy intolerance. I also have issues with fructose and fructans and my doc suspect my body produces too much histamine. After finishing a round of antibiotics for SIBO I had (still have) constant D even on a bland diet of chicken, rice, bananas and potatoes. It's not unusual for us to have more than one intolerance or issue going on.


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

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You and a few others on this thread are new to the diet and this is totally normal when you go gluten free. If you search for withdrawals and read old threads you'll see all the crazy stuff our bodies do when we go gluten free.

I went through a period where I was starving and could not stop eating. Then my tummy went wacky and I could hardly eat anything at all. Then I got intolerant of all sorts of things. Then I was intolerant of everything. Every time I ate I felt sick. Then it all resolved eventually.

For the first 2 or 3 weeks I was pooping literally 12 to 15 times per day!

So... the moral of the story is, do not panic. Try cutting out the major offenders that tend to upset our delicate and damaged new celiac guts.

Dairy

Soy

Tapioca

Xanthan gum

Nightshades (tomato, potato, eggplant, bell pepper)

Eat a clean healthy diet for a couple of weeks. Have meats, eggs, fresh fruit and veggies. Give your body what it needs to heal all that damage. Remember this is AUTOIMMUNE. Your body has been destroying your small intestine.

I was intolerant of all those things mentioned above. Now at 8 months gluten free I can eat ALL of it except soy. I can handle soy lecithin but anything with major soy gives me bad pain, etc. I do have to go easy on dairy and eat it sparingly.

In the beginning the gluten free breads and stuff might just be too complicated for your healing gut. I had to avoid them for awhile.


Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.

Ready to get well and get on with my life!

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