Gluten Free And Still Miserable

[queenofhearts]

Thanks!! Does EVERYBODY on the gluten-free diet have to be careful of the lotions, lipsticks, etc??

Lipstick, most definitely. Hand lotion, unless you NEVER touch your lips or eat with your hands. Facial moisturizers, foundation, sunscreens, &c. that could "melt" in perspiration & get into your mouth, shampoos & conditioners that could drip into your mouth in the shower-- those are the biggies. I don't worry so much about things like foot cream, leg shave cream, waterproof mascara, &c., just make sure to wash my hands well after applying anything & remove my eye makeup & lipstick with separate tissues. (The latter was one of my later insights!) Some folks do say that wheat content in anything makes them break out or something, so use your judgment.

Leah

[Lymetoo]

Thanks....yes, I can see how lipstick would be important for sure. I'm currently using Revlon, Cover Girl and Almay. Any comments on those?

Hey Blanche. Did you see my reply to you on page 1? We both posted at the same time.

[queenofhearts]

Thanks....yes, I can see how lipstick would be important for sure. I'm currently using Revlon, Cover Girl and Almay. Any comments on those?

I know CoverGirl Outlast is okay... it took weeks of pestering to get that little snippet of info, so I didn't ask about other products.

Leah

[judy05]

Hello Everyone.

I'm in my 50's and just got back a saliva test from Diagnos Tech in March and a comprehensive stool test from Enterolab in July. Both strongly indicate celiac so I'm accepting it as a done deal. The Enterolab test says I have one gluten intolerant gene (DQ1) and one celiac gene (DQ3), mild malabsorption, some intestinal damage from the looks of the transglutaminase numbers and a definite casein intolerance. The Enterolab test showed all of that in spite of the fact that I had already gone off all gluten and dairy and several other allergy foods for 2 months and in spite of the fact that the Diagnos Tech saliva test which I did 2 months prior also said my total salivary SIgA was even borderline low. The saliva test also said I am intolerant of eggs. After all that, I've just assumed I probably have soy problems too. I took a big IgG ELISA blood test from York and found a few other allergies as well.

I have been in the health field all of my adult life. I began courses to get my Naturopath degree and I would love to finish them, but everything has been on hold for nearly 8 years now because I've been so sick. As an adult, I am not classic celiac. Hindsight tells me that I probably was as a child with LOTS of indigestion, hives, ear infections, anxiety, itching skin and such. But most of my physical symptoms as an adult began 8 years ago with a GIANT panic attack from which I have never recovered. I have been suffering with panic (with agoraphobia), anxiety, unresponsive obesity, sweats, mild neuropathy, constipation, depression, insomnia and bloating for the full 8 years. Lately I have added VERY DISTRESSING ectopic heartbeats (flutters) and unrelenting vertigo. Those two symptoms are so scary that I have found myself making "bargains" with God that if I could just have those go away, I would graciously accept all the others. I have been checked over from top to bottom in emergency rooms and doctor's offices and spent thousands of dollars trying to figure out what was wrong with me. I even explored the psychology route in case it was all in my head. While being an avowed health food nut for 30 years with no dietary or lifestyle bad habits (honest!), I am the sickest person I know. Something has to be wrong. Well now I have probably found it.

I have been reading on several message boards to try to bring myself up to speed. But here are my current questions for some of you veterans:

1. If I have been gluten, dairy and egg free for 2+ months now, is it normal to still feel so badly? My dizziness and heart flutters are relentless and I just feel generally anxious, wobbly and lousy all the time. My depression isn't as much psychological as it is just being TIRED OF THIS!

2. I realize that a regular medical doctor would likely want me to do a gluten challenge and then do bloodwork and a scope test. I really DO NOT want to do that. Am I going to find it hard to live a celiac lifestyle without a "proper" diagnosis? Or are there doctors out there who will accept the stool test?

3. Scientifically, if a gluten and dairy intolerant person eats those things heavily her entire life and then suddenly stops, is there a detoxification process that must occur and is the length of time determined by how long the celiac went undiagnosed? Since I have not had diarrhea or vomiting to rid myself of the offending gluten and dairy during my life as many celiacs do, but instead have been bound up with constipation and obesity, is there actually gluten or casein residue that the body must deal with? Or is that not the way it works? I understand the autoimmune mechanism with the damaging of tissue and inflammation. I'm just trying to figure out why I am not responding to a gluten and dairy free diet with any improved well being at all. I'm actually worse and I'm going on 3 months now.

NOTE: I couldn't stand it any longer and called my gp today to tell him about my tests. He's a really nice guy and I was hoping he'd help me on my terms. But he is recommending a blood test even though I have been off gluten for 3 months. He says that it won't matter. He is also recommending a colonoscopy. Although I really respect my doctor, it doesn't sound like he fully understands how this works. Not sure what to do now. If I didn't feel so badly, I'd just do this alone and not deal with the medical establishment. I just don't know if I'm brave enough. These symptoms are scary.

I really appreciate the wonderful service provided here. I've never participated in a message board before. So if I've put this in the wrong place or gone on too long, please forgive my ignorance of procedures. I'll learn eventually. Thanks so much!

Hi,

I just wanted to welcome to the board. I'm sure you will find the answers you are searching for here on this board. Perhaps this is God's way of helping you to find help. First of all, your symptoms sound a lot like mine were in the beginning. Have you had an upper GI or endoscopy done? You could be suffering from acid reflux. I do not have Celiac's disease but I am gluten intolerant. One of my biggest problems was the acid reflux, it made me very anxious, heart flutters, and the dizziness. It got so bad that i couldn't drive ( I love to drive), thank God my husband was always with me when i had these "attacks". After the "scope" I learned thet my acid reflux was so bad that I was diagnosed with Barrett's ring around the esophagus, but my biopsies have always been Negative. It can, in some cases turn into cancerous and I will always have to be monitored. To make a long story short I started on an acid reducer , gave up gluten and DAIRY and I have been doing much better, not completely cured (I was 62 when diagnosed so I have had a lot of damage), and I intend to stay gluten free forever. My GI doc says that I can eat wheat because I had genetic testing which was negative. My advice is to get yourself to a good GI doc and get an EGD and Colonoscopy. Everyone of us should have these areas scoped at least once in your life, just like we have to have pap tests and mammograms for women and test for prostate cancer in men! Thanks for listing, I will be anxious to hear from you...

[Gentleheart]

Hi,

I just wanted to welcome to the board. I'm sure you will find the answers you are searching for here on this board. Perhaps this is God's way of helping you to find help. First of all, your symptoms sound a lot like mine were in the beginning. Have you had an upper GI or endoscopy done? You could be suffering from acid reflux. I do not have Celiac's disease but I am gluten intolerant. One of my biggest problems was the acid reflux, it made me very anxious, heart flutters, and the dizziness. It got so bad that i couldn't drive ( I love to drive), thank God my husband was always with me when i had these "attacks". After the "scope" I learned thet my acid reflux was so bad that I was diagnosed with Barrett's ring around the esophagus, but my biopsies have always been Negative. It can, in some cases turn into cancerous and I will always have to be monitored. To make a long story short I started on an acid reducer , gave up gluten and DAIRY and I have been doing much better, not completely cured (I was 62 when diagnosed so I have had a lot of damage), and I intend to stay gluten free forever. My GI doc says that I can eat wheat because I had genetic testing which was negative. My advice is to get yourself to a good GI doc and get an EGD and Colonoscopy. Everyone of us should have these areas scoped at least once in your life, just like we have to have pap tests and mammograms for women and test for prostate cancer in men! Thanks for listing, I will be anxious to hear from you...

Hi Judy,

No, I haven't had any scopes done yet. I just got my stool test back. It was pretty definite so I probably do have celiac. As I said in my opening post, I tested positive for everything tested, including dairy and genetically have both a celiac gene and a gluten intolerant gene. I really don't want to go any further with tests, but will have to if I don't feel better soon. I really don't have any heartburn or other acid feelings in my throat, which I would assume I would need to have to have acid reflux. I have A LOT of heart flutters and extreme dizziness all day long, though. It pretty much never goes away for more than an hour here or there. It's very scary. My gp doesn't seem to be quite up to date on celiac and although I really like him, I'm not sure whether to just give up and go to a gastroenterologist. I'm really not much for heavy doctoring. I tend to be more alternative. Of course, I will do what I have to do if it comes to that.

Thanks so much for your interest and advice.

[judy05]

Hi Judy,

No, I haven't had any scopes done yet. I just got my stool test back. It was pretty definite so I probably do have celiac. As I said in my opening post, I tested positive for everything tested, including dairy and genetically have both a celiac gene and a gluten intolerant gene. I really don't want to go any further with tests, but will have to if I don't feel better soon. I really don't have any heartburn or other acid feelings in my throat, which I would assume I would need to have to have acid reflux. I have A LOT of heart flutters and extreme dizziness all day long, though. It pretty much never goes away for more than an hour here or there. It's very scary. My gp doesn't seem to be quite up to date on celiac and although I really like him, I'm not sure whether to just give up and go to a gastroenterologist. I'm really not much for heavy doctoring. I tend to be more alternative. Of course, I will do what I have to do if it comes to that.

Thanks so much for your interest and advice.

Hi,

Just wanted to pass along that I had very little heartburn either, that's why I was surprised about the severity of the problem. I thought that since I was an RN that I had a handle on everything. I sure have learned a lot in the past 5 years. I was so sure that I needed to have my gallbladder removed and so did my

GP, he sent me to a surgeon who completely ruled that out. He is the one who referred me to the GI doc. I'm glad he did because right away he tested me for antibodies, IGA was 75, he did the 2 scopes and found one polyp on the colonoscopy ( which was neg for cancer).He did find the severe GERD and suggested a gluten free diet but after he found that I didn't have the gene he said I could eat wheat and dairy, which is why we came to a parting of the ways. Someone else on this board suggested that the acid reflux is known to cause great anxiety symptoms and dizzines, and heart fluttering. If you have symptoms that severe I urge you to get scoped, you won't be sorry. I belive in some alternative medicine but only after a complete physical screening. Good luck to you! Acid reflux can be a precursor to Celiac and many of us have it.

[Gentleheart]

Hi,

Just wanted to pass along that I had very little heartburn either, that's why I was surprised about the severity of the problem. I thought that since I was an RN that I had a handle on everything. I sure have learned a lot in the past 5 years. I was so sure that I needed to have my gallbladder removed and so did my

GP, he sent me to a surgeon who completely ruled that out. He is the one who referred me to the GI doc. I'm glad he did because right away he tested me for antibodies, IGA was 75, he did the 2 scopes and found one polyp on the colonoscopy ( which was neg for cancer).He did find the severe GERD and suggested a gluten free diet but after he found that I didn't have the gene he said I could eat wheat and dairy, which is why we came to a parting of the ways. Someone else on this board suggested that the acid reflux is known to cause great anxiety symptoms and dizzines, and heart fluttering. If you have symptoms that severe I urge you to get scoped, you won't be sorry. I belive in some alternative medicine but only after a complete physical screening. Good luck to you! Acid reflux can be a precursor to Celiac and many of us have it.

It's really hard for me to get this personal, but here goes. How bad is the scoping process? Since I'm a longtime panic disorder person, I'm irrationally scared spitless of most everything. It's a real handicap. Way more than the average person. This procedure sounds just awful to me. I honestly don't know if I could do it. I've never done a colonoscopy either. Not sure about being put under, even part way. Is it better to go to a large hospital with an official gastroenterologist? Do they care whether you are scared or not?

I would just quietly go ahead with my own gluten free casein free diet if I felt OK. But I sure don't. I asked before on a previous post if I should just go to a specialist first and skip my gp. He wants to do a blood test when I haven't eaten gluten for 3 months. He says it won't matter. That confuses me. He also is wanting to do the colonoscopy but didn't mention the other one. Maybe he's ruling out things like cancer. I don't know. But I sure don't want to get a negative blood test out of the deal. Then they will NEVER believe me. Sorry to be negative. I'm having a pretty discouraging day and didn't sleep all night.

[judy05]

It's really hard for me to get this personal, but here goes. How bad is the scoping process? Since I'm a longtime panic disorder person, I'm irrationally scared spitless of most everything. It's a real handicap. Way more than the average person. This procedure sounds just awful to me. I honestly don't know if I could do it. I've never done a colonoscopy either. Not sure about being put under, even part way. Is it better to go to a large hospital with an official gastroenterologist? Do they care whether you are scared or not?

I would just quietly go ahead with my own gluten free casein free diet if I felt OK. But I sure don't. I asked before on a previous post if I should just go to a specialist first and skip my gp. He wants to do a blood test when I haven't eaten gluten for 3 months. He says it won't matter. That confuses me. He also is wanting to do the colonoscopy but didn't mention the other one. Maybe he's ruling out things like cancer. I don't know. But I sure don't want to get a negative blood test out of the deal. Then they will NEVER believe me. Sorry to be negative. I'm having a pretty discouraging day and didn't sleep all night.

Dear Blanchmae,

I understand completely. Even though I have been a nurse for many years, I had a very bad experience following thyroid surgery. I won't go into details but I spent four days in Intensive Care. I was supposed to have gone home the following day. Ever since then I have become extremely nervous around having any procedures. The Endoscopy was fairly easy. You have to refrain from eating the night before and the next morning. In the hospital you go into a short procedure unit or GI Lab, whatever. They do a short history and physical and start an IV. Let them know you are very nervous and they might adjust your anesthesia. They take you into the room, turn you on your side and begin the procedure. They usually spray your throat with something to numb your gag reflex. The nurse sits with you and is very nice and explains everything to you.

In the meantime they are giving you medication in the IV which makes you feel drowsy. I was aware of everything that was going on but felt like I was in LaLa land. I don't remember the tube going down my throat, I wasn't in pain. My Dr knew I was a nurse so he was showing me pictures and talking to me the whole time. I don't remember the tube coming out and I was back in my room before I knew it. You have to stay in recovery until your gag reflex comes back, then they give you something to eat and drink, then you go home and sleep most of the day. You have to have someone with you to drive you home or they won't let you leave.When the doctor puts the tube into your stomach he checks for any inflammation, ulcers, and does a biopsies from several different areas to be sent away for analysis.He is also looking for damage to the villi to confirm Celiac. They are small hair like projections which grow on the intestinal walls.

The Colonoscopy is a procedure in which the doctor passes another tube up into the rectum which enables him to visualize your large intestines. He will be looking mostly for polyps, tumors, diverticuli, etc. You also receive an IV medication that puts you "out" but I remember the whole thing. I won't say that it wasn't painful because it was for me. Whenever they pressed on my abdomen I would scream. The doctor said that I have a lot of "gas" and most people don't react that way. Again you come back to recovery and then you go home. The worst part of the procedure is the prep the day before. You have to take a special laxative to clean out your intestinal tract. You can also watch the procedure on the monitor which I did.

I know you are scared but you have to have it done to get a diagnosis and find out what is wrong with you. You can't keep going on as you are and I know you will feel better once it is all over. You make get lucky and never have to have it again. My husband has to have a Colonoscopy every three years because his brother died from colon cancer.If you have any questions let me know. If you are near a medical center by all means get to the best GI doc around. I am in a small town but the hospital was voted one of the top 100 small hospitals in the nation. My GI doc has diagnosed over 200 Celiac patients in the area so I felt comfortable with him.

The nurses who work these units are very well trained, they know you are scared, many of them have been through the procedure. That was the best part of the procedure, they are very compassionate and their caring is so reassuring. you usually have the same nurse assigned to you and that is very comforting. Please, please don't be afraid.

[jerseyangel]

Blanchemae--I had the endoscopy and colonoscopy done the same day. I was very nervous, to say the least, but it wasn't nearly as bad as I had imagined. I was asleep for the whole thing. I remembered having the IV put in, and being wheeled into the procedure room. The nurse asked me to turn onto my side, and I remember nothing from that point until I woke up in the recovery area. I felt fine (rested, actually) after I woke all the way up, and remember being so relieved it was all over! If possible, have them put you out completely.

[Gentleheart]

Blanchemae--I had the endoscopy and colonoscopy done the same day. I was very nervous, to say the least, but it wasn't nearly as bad as I had imagined. I was asleep for the whole thing. I remembered having the IV put in, and being wheeled into the procedure room. The nurse asked me to turn onto my side, and I remember nothing from that point until I woke up in the recovery area. I felt fine (rested, actually) after I woke all the way up, and remember being so relieved it was all over! If possible, have them put you out completely.

Thank you so much for that encouragement! Being completely out would probably be the only way I could do it. Your experience doesn't sound so threatening.

Does anyone have an opinion about whether it would be worth it now to do a scope after 3 mos gluten free? I haven't felt any relief at all in the 3 mos, so maybe I'm still getting gluten somewhere. I'm really trying to watch closely. But I really don't want to do a gluten challenge. I did the stool test two weeks ago. Active antibodies were still high enough to solidly register and I did show mild malabsorption. I also have both gluten genes, one celiac and one gluten intolerant. Does anyone know if that mild malabsorption damage would likely still show up on a biopsy now? I sure would hate to muster up the courage to do it and then have it come back negative. I guess that's always a possibility with anyone.