mela14

I had abdominal pain and distention all the time. The way it was explained to me was that there were little islands of endo that flared up here and there. i did have heavy and painful periods so I guess that's why they thought endo.Also about 10 years ago I had an ovarian cyst that ruptured..(that was torture)..they said that some endo could have implanted itself. anyway, i agreed to a lap and once they went in they severed my epigastric artery. that was the start of adhesion related problems. I finally had a total hysterectomy 2 years ago and everything was stuck together...bowel,uterus,bladder etc... With the hysterctomy..the female problems of cysts and heavy painful periods were gone but the GI problems continued. No one gave me an answer..I searched myself and now it is making sense..correcting it is another story and will take time. I can't undo what was done....but in reviewing all my pathology reports .... they were all negative for endo. the uterus was neg for adenomyosis. Some very prominent doctors that went in to remove the adhesions all said..."no endo"..this was before and after the hysterectomy... so we can't say it was just because I didn't have estrogen..

I believe that the distention and pain was all GI...from gluten intolerance or other intolerances. I had some very traumatic things in my life which could have brought it out. A really bad car accident in Mexico for one...Getting the bends scuba diving...getting some kind of bug while traveling....there are so many other things too..oh and finally a really bad virus(Parvo) that just changed my whole immunity.

Hoe this give you a better picture of my GYN/GI nightmare.

yesterday I had 2 teaspoons of ice cream as desert. At my Dietician's suggestion I had it with Lactase (by Solgar). I thought I was safe...I had stomach pain and bloated and nausea from that small amount. When I looked at the ingredients for the lactase it said: mannitol,microcrystaline cellulose, guar gum, natural vanilla flavor(powder), vegetable magnesium stearate.

I assumed there was some hidden gluten as it is a chewable wafer.

Tonight, after feeling ok with dinner I decided to have the same 2 teaspoons of ice cream without the Lactase enzyme. A half hour later the nausea, stomach pain and bloating start again! I was having a good evening too......

so, I checked out the plain vanilla Haagen-das ingredients and this is what it says: cream, skim milk, sugar, egg yolks, natural vanilla.

I haven't been able to have eggs lately........they make me sooooo sick...maybe it's that. I don't think it's the lactose intolerance because I can have a little milk in my coffee and it doesn't bother me.

It's safe to say that I won't be having that ice cream anymore. I'm just not sure if ALL ice cream is off limits or if it's the egss that are really doing me in? Does anyone know if any of the Lactase ingredients have gluten? I haven't able to find the mannitol on any lists.....gluten-free or not. hhmmmmmmmmmmm

I am reacting to so many things and trying to figure it out. It gets a little complicated at times.

Thanks,

How would I go about getting that information? I tried to call one of the drug companies regarding another medication and got nowhere. I called the pharmacy and they were not very helpful. Actually they were upset...but in the end they faxed me the ingredients for the meds(imitrex and xanax) .....it looked ok... So at this point I have to go with the way that I feel when I take them.

I'll never take xanax again! there is something in there that makes me sooo sick!Imitrex makes me sick too but when your head is exploding and it's going on a day or so of a killer migraine...you'll take anything. gotta find something else that works for me without all those nasty side effects........now...trying to get a dr to work with me on this is another story.

From your mouth to Gods' ears Tom! There are times that I am so wiped from trying to get better that the only thing that I could do is "be sick". It requires less energy...It just happens. Getting better ...on the other hand is a lot of hard work!

Someone passed a comment to me once that I ran to too many different doctors! I thought about it and discussed it with my therapist at the time....she said not to pay attention to what people said....they don't know any better. She also said that when I stopped running to doctors would be the time to worry. It meant that I gave up on trying to help myself. I've always remembered her words and just kept pushing myself to get to the bottom of it. I vowed to leave no stoned unturned....

Thanks Stef....

I have to just keep doing what I am doing and hope that with time things will heal and get better. What other choice do we have? there have been times that my gut just felt saw raw!!! yesterday was one of those days.....meds don't sit well with me.

OK.... gotta stay focused! thanks for the positive feedback.

I've also been going around in circles with doctors. I kept losing weight,(went down to 89 lbs) had terrible daily migraines, diahrea, muscle pain, joint pain and at one point I was so sick that I wound up in the hospital! I had a rapid heart rate, thryoid was fast and all the above syptoms. I was told it was a flu. They gave me IV fluids and asked if I felt better I said no but they sent me home anyway. Not knowing that my diet was making me so sick I continued with what I was eating and just got worse. I told the doctors I felt better when I didn't eat...but nothing got through to them. I was asked if I had an eating

disorder..hhhmmmmmmmmm...like what?? They thought because I weigh so little I must be anorexic. The neurologist I went to because of horrific migraines sent me to a psychiatrist to evaluate for psychosomatic illness. He said that it was impossible for a young, attractive lady to have so many complaints! Can you believe that? Of course I said something to him right then and there and he just said...well you've got 5 things listed on your medical history here. ...how could it be that you have 5 bodily functions breaking down at one time! I never went back there....but I did go to a shrink because I knew that stress was making me worse. The shrink said you have to get to the bottom of what is going on with you....You are not psychosomatic..and with that he sent his report to the neurologist!

Soon after they found an immuoglobulin deficiency and I am being treated monthly with IGG replacment. At least I am not getting as sick as before. I complained to my allerigist/immunoloigst about all the GI problems and still feeling like crap. He said to go to an infectious disease specialist. Anyway, the point of that story is that right under his nose were blood results from my previous internist for Gliadin AB (IgG)! He's an allergist...do you think he would have noticed something was wrong and commented on it? Especially since I had been complaining of flu like sypmtoms, stomach pain, bloating and diahrea all the time. I told him I felt like I kept getting viruses....hhhmmmmmm a little creative thinking here please!! afterall ...you ARE a doctor!

I know I am just going on an on...but I am so disappointed in the medical profession! Instead of helping me...they just made me worse by needless surgeries and nonsense treatments! I guess I was so stupid....(all this before I got hip to computers) Thank god for the Internet! Enough said.

I'm originally from Brooklyn, NY but moved to Manalapan, NJ in 2000. I lived there for 2 years and then headed south to Florida! My husband just misses is so much that we are moving back up to NJ (same area)

Where are you from?

Thanks stef,

I think I'll just steer clear of it for now. It just doesn't work for me. I was so sick from it that it's just not worth it for me.

Thanks for your help though.

ok..i'm throwing out the gas-x!!!!!

is there a list somewhere that I could check on durg ingredients?

Are you avoiding sugar too? What yeast killer pills are you on? do you take a probiotic as well. If so...which one.

Just curious...if it helped you...maybe it can help others.

Thanks,

Hi Tom,

Could you tell me more aobut the DNA test? I had a few different blood tests after they found Gliadin AB (IgG) to be very high. The other tests were normal. I also read somewhere that if you have an immune deficiency (IgA deficiency) then those other tests would not really be valid. Well, I fall into that category as I have Primary Immune Deficiency and receive monthly immunoglobulin infusions. That also went undiagnosed for years. It's funny how I had to be my own dr. and figure things out! I am just trying to figure out if one problem caused the other. I guess it doesn't really matter. I DO know that I have less problems when I don't have gluten. That's enough evidence for me but I am still trying to get the diet right!

I have a way to go before I can say that I actually feel better but I think that I am on the right path! Just curious about the DNA test.

I've read before that gas-x has gluten. I wanted to take one yesterday but then thought again and checked out the ingredients. I don't see where the gluten is. It's actually a generic form of extra strength gas-x. What should I be looking for in the ingredients?

Do you think it could be the peanut butter?

when I first started on the gluten-free diet (3 weeks ago) I went to a dietician and she wrote down the things that I could have and gave me a book to keep a food diary. It is the BEST thing I am doing. I have found so many food intolerances this way. Peanuts and soy are definate NO-NOs for me. When I look back in my food diary I can clearly see what I ate...the time I ate it..and the emotion I had afterwards. There is no guessing ( as I have done in the past).....maybe it's this...maybe it's that!

Yesterday I started with Almond butter. I didn't use that much because I was afraid but I think it was OK. I'll try it again today.

Still trying to figure it all out but at least I have a direction now!

Thanks for the buckwheat advise. I will definatey never have it again. I remember it made me sick years ago before I even knew what was giong on with me. In doing some research on line...it was listed with foods to avoid. I should have known.

thanks,

There's no way that I would be able to continue eating gluten for the test. You'ld have to wheel me into the hospital. That's how sick I would be!

I get soooo sick when I accidentally have it.

please let us know how you make out.

Thanks,

Stef.....thanks for the info on Wegmans. I am moving back up north in a few months and wegmans is right near me. I used to shop there all the time and it's good to know they have some celiac stuff.

Thanks,

Ater reading your post I see so many similarities. I'm sure we all do. I am still in the learning stage but would not mind sharing information with you. I see that you are from Pompano Beach. I live in Aventura and do not have a doctor here yet so if you find someone please let me know. I'm originally from NY and have only been here about 2 years...I have yet to find a good GI dr. The dr who find the gluten intolerance is up in NJ....I felw up to see him about a month ago out of desparation. It was right there in one of my old blood tests that I brought along. I am still trying to work out the diet and medications but I have to say that I feel better when I do NOT have gluten. I've also discovered other intolerances.

Email me anytime...

Mel

mela14@bellsouthnet

Karen,

Thanks for the quick reply. Unfortunately, I had a total hysterectomy 2 years ago. I wish I would have waited but the pain from the adhesions was sooooo bad. They said I probably had adenomyosis too but the pathology reports for ALL my sugeries was negative for endo. When they did one of my first laps they accidentally severed an artery which was the beginning of all the adhesion problems. I saw a new gyn last week , who feels along with others that I never had endo...it was probably gluten intolerance all along especially since most of my symptoms were abdominal distention and pain. When I point to where the pain is he says that it's intestinal and bowel. hmmmm Of course this made me very upset...but I am trying to move forward in spite of all the disappointments. So I am back to square one with abdominal pain, bloating etc. At least now I know to avoid the gluten and it is helping but there are so many other things that are setting me back. The imitrex I took last night destroyed me intestinally as well as physcially. My entire body is aching and and feels flu like. I feel like I was hit by a mack truck! I need to rest. Maybe tomorrow will be a better day.

Will my "leaky gut" ever get better? What can I do to help it along??? Is there something esle I should be doing or some other test I should have.

Thanks for you input,

mel

I was also diagnosed with fibro and chronic fatogue....all post viral...before I learned of my gluten intolerance.

They only thing gave me (for years) was different meds(pain killers, etc) and nothing helped. I can see a direct correlation between the pain and gluten. It's probably due to the fact that we don't absorb necessary nutrients porperly. I also think we are more sensitive so a lot of things that we ingest and that they directly affect out muscles. At least that's how it's been working for me.

Mel

I was diagnosed with gluten intolerance about a month ago have gone gluten-free with the exception of a few slips. My gut is still having a rough time and I am seeing a dietician to help me with my daily dietary challenges. I am still experiencing GI problems, headaches, muscle pain and fatigue whenever accidentally ingesting gluten. I've also discovered other intolerances and have been trying to avoid them as well. The other thing that I am having a rough time with is medications. I have found that a lot of medications cause my symptoms to flare up! Some will actually cause fatigue, heart palpatations, muscle pain, bowel pain or intestinal irritation and headaches. It's almost like a full blown allergy attack. My dr said the gluten caused a leaky gut and other things are more problematic. In taking some of the medications...the muscle pain is so bad that I actually feel toxic! Ive' checked the labels on these meds and they are on the safe drug list for gluten. I'm worried that these intolerances to meds will never go away and that they are making the intestinal problem worse. As soon as things calm down....if I need to take a med the whole thing flares up again! I am avoiding all meds as much as I can but there are times when a migraine kicks in that I just have to. Has anyone else had these problems with being so sensitive and what else can I do for the leaky gut? For me, I am just not healing fast enough. Could it be anything else?

Thanks,

Mel

Where can you check medications against the gluten free list?

I was given axanax by my dr and got deathly sick on it. frst heart palpatations, then sweating, dizzy, weak, sour tummy and gut. i felt like i had swallowed poison. I was out of it the entire next day...non-functional and in bed. I definately reacted to something in it. I am also soy, egg and peanut intolerant.

They make me sooooooooo sick, bloated and lots of pain in the gut!

How can I go about doing the York Test/ does a dr need to order it or can I do it myself.

any information is appreciated as i have lots of food allergies that I am finding out about through a food diary and working with a dietician. Too bad she doesn't know more about gluten.

mel

Anyone know of a dietician or dr in the Miami area? so far the dietician I saw gave me some recipes...after looking at them I laughed. some had muffins with oat flour or gorund oatmeal........hmmmmmmmmmmmm I aready told her that i couldn't do oatmeal. the other recipe had barley flour and orange marmalade........duhhhhhhh. and yet another with vanilla extract ...not even sure if that is OK.....but decided against all of them.

Any thoughts?

Mel

I just posted with the same scenario. My blood test results were similar to yours. In addition, I also have Primary Immune Deficency and have an extremely low IGA all the time. Which probably makes the other tests seem like there is no problem. I started monthly immunoglobulin infusions about a year ago but complained to my immunologist that I was constantly getting viruses with diahrea. he didn't know what was wrong.

The though of me going all out to eat gluten for a biospy would probably land me in bed or in the hosptial. I would be deathly ill and I don't thnk it would be worth it for me.

I'm not sure if you get all the GI syptoms but that would be a factor for me. I am also finding that I am soy, peanut and egg intolerant. Not sure how this all happened but I do know that I feel better when I don't eat these foods as I become immediately ill after ingesting them.

So, not sure if this helped you but would love to know how you make out. Good luck.

mel

This is my second time posting and could use some help here. I've been sick for about 10 years with so many different health problems. Through the past few years things have gotten really bad. I am constantly sick and complaining of muscle and joint pain.Without getting into the whole nightmare I will say that I have lost a lot of weight and complained of feeling week, malnourshed, achy, extremely fatigued with constant migraines. I also complained of diahrea and foul smelling gas and bowel movements. I always assumed it was viral because of all the flu like sypmtoms that came with it. I was told it was fibromyalgia. I am down to 92 libs at 5'3.5". I have not been able to put on weight. I have been to many doctors and told them that I feel better when I do not eat so they assumed I was anorexic. Many times after eating i get sick and feel like I swallowed poison. I got so bad that I used to moan and cry in my sleep feeling sick..and so bloated that I looked pregnant! Often times this happened after going out to dinner with my husband. I felt toxic! i went to about 4 GI drs and all said IBS . they also sent me to gyns thinking it was endometriois. ( i had 7 surgeries for it!! and no ENDO) anwyay, my question is that recently I flew out of my state to see a dr for chronic fatigue. I brought some blood tests and he said that I showed strong positive for Gliadin Antibodies. He put me on a gluten free diet and sent me to a dietician. I have been keeping a journal and finding that I am intolerant to a few other things too. A few times I accidentally had gluten in something and I was sick for days. Is the Gliadin AB test a reliable one for gluten intolerance? Other gluten blood tests seem to be normal. I think there are 3 different tests that can be done. The gliadin AB came back with a 63......which was very strong positive. So is it safe to say in the presence on my symptoms and this one particular blood test that I should continue on this diet? I don't know who else to go to. Another interesting thing that I learned on line is that over-exposure to gluten can cause this intolerance along with trauma, surgery, etc. Well...yes to all of the above! My dad is a baker and I grew up in an Italian bakery....bread and pastries were always around and we thought nothing to eat them for desert. I now learned that everything he baked was made with High-Gluten Flour! I never even knew what it was! I'm not sure what my next step should be and don't want to go through another endoscopy or colonscopy only to bve told it is IBS. Could it be that years ago when they did those procedure they didn't even bother to test for gluten? I am so confused!

Any insight would be appreciated.

Thanks,

Mel