Marlene

Hi, I am living in Brantford, Ontario. (We've tried moving to Alberta and New Brunswick but both didn't work out due to job issues. Too bad. I don't like Ontario.)

Just found out that there is a Whole Foods in Oakville which is about 45 minutes from here. Yeah!! I can't wait to go and check it out. Meanwhile, I am finding more and more places that sell gluten free. One of the Zehrs here in Brantford just added a whole section. I made sure I personally thanked the manager.

And if you are ever in Brantford and need a restaurant to go to on a Friday or Saturday night, my daughter (who is in University so only works part time -- Friday and Saturdays) works at Moose Winooskis so anytime anyone comes in with gluten intolerance/celiac, the other staff call my daughter over and say "There's someone here who has what your Mom has." My daughter is very knowledgeable about the gluten free diet (also casein free) and she will make sure you get taken care of.

Marlene

Gluten free since July 1, 2006

That was the first thing I thought of too. That poor lady. Imagine not being able to complete your flight because of gas??!! I don't know why they wouldn't let her back on. I saw a message board somewhere else on the net dealing with this specific problem. I didn't have time to get registered and put in my 2 cents worth but I betcha a lot of those people have Celiac. They sound so desperate -- some of them won't leave the house because of gas. I can relate -- before I went gluten free I had one day that was really bad and I called in sick to work It was so depressing.

Marlene

Hello and thanks for your reply. After I had my gall bladder removed, I had chronic diarrhea -- worse than before which is one of the main reasons I had been going to the GI specialist. 6 days after going gluten free, the diarrhea slowed down considerably. However, the pain (which I described in my first post) comes and goes. Sometimes I will just get one episode and it's over in a few hours. Sometimes the pain and the pressure just seems to build and it lasts for days. While it has improved going gluten free, it's not completely gone. I had a really good spell where I had no pain or diarrhea for over 2 months, then I took some homeopathic remedy to build up my digestive system and the pain and diarrhea has returned. It really feels like pressure, like something is building up right behind/ under my sternum and ribs. Ironically, this is the pain that made doctors think it was my gall bladder. I didn't have any gall stones -- but my gall bladder was malfunctioning.

I have been back to my surgeon once for the pain, he did an ultrasound which (of course) did not show anything. He just kind of shrugged it off and said something about IBS, intestinal motility. I feel he took out my gall bladder without enough investigation and I don't want to back to him. He is "scalpel happy".

Marlene

I'll try to keep this brief. Diagnosed with gall bladder malfunction last spring before realizing I was gluten intolerant. Became much worse after gall bladder removal which led to dx of gluten/casein intolerance. Have done research since then and realize that gluten intolerance can cause gall bladder malfunction. Continue to have pain under my rib cage including a feeling of pressure like something is going to burst. Afterwards will often have frequent/loose bowel movements which (seems to me anyway) contains a lot of bile (acidic). My theory is that gluten intolerance has damaged the sphincter of oddi (muscle which regulates when bile is released into small intestine, activated by CCK - same hormone which causes gall bladder to empty) which now constricts the sphincter of oddi, keeping bile from flowing through. When it releases, too much bile is sent into the small intestines resulting in messy BM's. Does anyone else know anything about this? There is a procedure that can be done to cut the sphincter of oddi but it is rather dangerous, has a 5% fatality rate, and can result in pancreatitis. I have been gluten free for 6 months now and would love to resolve this.

thanks!

Marlene

thanks a lot for the helpful replies! As it turns out, I did not go back to work. I was still way too sick. Matter of fact, I haven't been back yet. I ended up with a fever and started seeing spiders crawling on my pillow. IMHO, that means you are too sick to be at work I don't like going to work sick and I don't like it when other people show up and give everyone their flu/ cold etc. However, I hear how the management goes on and on about absenteism blah, blah, blah. So now I hope to go back tomorrow and will be greeted by a huge pile of paperwork on my desk and the cold shoulder from a few select individuals.

Marlene

hey,

I have this horrific head cold/ flu going on but I need to go in to work tomorrow. I have taken Neo Citran Thin Strips in the past before I knew I was gluten intolerant. These strips disolve on your tongue and they really help with cough, runny nose, itchy eyes etc etc.. I only take them when I am at work since I try to avoid medication as much as possible. I have been all over the net trying to find out if they are gluten free but can't find an answer. I checked the ingredients list but I have no idea what half of them are and they are not on any gluten free ingredient list. I am really hoping one of you will know if they are gluten free and it would be great if I could find this out before tomorrow Please help!!

Thanks!!

Marlene

I can't handle certain smells at all either. I work in small office and the other day a client came in for a meeting and he was wearing some strong cologne. I felt quite sick after about half an hour. I also get a strong pain under my ribs when this happens. Is that weird or what?? I work at a place that makes nutritional supplements and depending on what is being manufactured, I get affected by the smells. I have been in the lab at work and had to get out of there because I felt nauseaus, light-headed, and had intense pain under my ribs. I can't stand the smell of perfume or cigarette smoke. Sometimes even certain cooking smells can have me heading for the bathroom. I have been researching links between this and mercury toxicity since I have a mouth full of mercury fillings. There seems to be a connection between reacting to smells, perfumes, food intolerances, and mercury fillings. If only I had known then (when I was getting my teeth fixed with mercury) what I know now.

Marlene

Thanks for the responses. I called my Naturopathic doctor the other day and she thinks it could have something to do with the fact that I had my gall bladder removed this past spring. My body is still trying to compensate. I had these pains before I had my gall bladder removed and the Gastro specialist was positive that removing my gall bladder would take away the pain. Boy, was he wrong. I want my gall bladder back since I am worse off without it. Sometimes I personally think it could either be sphincter of oddi problems or an ulcer. This is because I get that pain if I am really stressed out and both of the above are aggravated by stress. I really dread going back to either my family doctor or the specialist again. They were completely clueless when it came to gluten intolerance. My family doctor told me I had a nervous tummy and should just take a day off work and relax. The gastro specialist told me I had IBS, I needed therapy to deal with "issues" in my life, and finally blamed it on my gall bladder (after 4 years of continuously going back to see him). I wish I had a doctor that I could totally believe and trust. I am hoping that as my body heals, these pains will become less. Meanwhile, I have the achy body, fevers and stuffed up head kind of flu today. Sigh. Heaven is looking better all the time.

Marlene

I just would like to add that if you are taking L-Glutamine you should be taking a good probiotic at the same time. They work together to build up healthy bacteria in your gut. Don't take the Garden of Life probiotic -- a number of us have reacted to it even though it is supposed to be gluten free. It contains barley and oat grass.

Marlene

This is something that I have been wondering about too. My Enterolab results stated that I have 2 gluten intolerance genes -- not Celiac. However, my TgG levels were elevated, indicating tissue damage. Not only that, a number of years ago the outer third of my eyebrows became very thin. I asked a Naturopathic doctor about that and he said it was evidence of an autoimmune disorder and figured it was thyroid. I had my thyroid tested and it was fine. I have been gluten free for 5 months now and my eyebrows are growing back in. I am thinking there must have been some kind of autoimmune reaction going on in my body even though I don't have Celiac genes.

Marlene

Hi DVK,

There is a thread somewhere else on this board which deals with "The Trigger". Sorry I'm not sure which section it's under. You will find a lot of interesting stories on that thread. It seems for a lot of people that illness, such as mono, was the trigger. Also, for a lot of people it was a time of extreme emotional stress. I have also read that it can be set off by abdominal surgery such as gall bladder or appendix. Although I think that could be hard to prove seeing as how gall bladder disease can be a symptom of gluten intolerance. That would make it a symptom rather than a trigger.

Marlene

Symptoms definitely do come and go -- even now after being gluten free for 5 months I have my ups and downs. I too have had times, looking back, where I was fine. Then for a while symptoms would flare up, go away, and come back a few months later. I think that is what makes it so hard to diagnose. Even 4 years ago when things really kicked into high gear for me, it started with 6 weeks of diarrhea after every meal. After a while, this got better although it never went back to being what it should. One thing I find that really makes symptoms flare up is stress -- either emotional or physical.

Marlene

Hi all,

I was just reading a Nutraceutical magazine at work and came across an advertisement for a new throat lozanger (sp?) which is gluten free (according to the magazine.) They are called Soothing Organic Throat Drops and come in 3 flavours: Luscious Lemon Honey, Refreshing Cherry, and Zesty Orange. They are organic, all natural, and contain key immune support in the form of zinc and Vitamin C.

Take care,

Marlene

The only cough syrup that helps me is Benylin but now that I am gluten free I don't know if it's allowed. I read the label and checked some websites but couldn't find anything difinitive.

Also, if Halls cough drops are not gluten free, do you know of any that are? It's that time of year again and my throat is killing me, my head aches, and I feel a cold/flu coming on.

Thanks,

Marlene

This has happened to me a few times and there seems to be a pattern but I can't figure out for the life of me what triggers it.

Sometimes I get pain across my abdomen, under my ribcage. The pain can be anything from feeling like someone is pulling an elastic tight inside my abdomen to a searing feeling. This is often followed by frequent bathroom visits (not necessarily D but not "normal" either). Then for the next few days, I have a burning sensation on my tongue. I am also extemely chilled. This all makes me think that something is inflamed -- probably my small intestine. I have been gluten free for almost 5 months now and am extremely diligent about it. If I have doubts about any food whatsoever, I don't eat it. I don't really think this is from gluten and it does get worse if I am under stress.

Any ideas or similar problems/solutions? Thanks!

Marlene

Thanks!! I found what I was looking for

Is there any way that I can view all the posts I entered? I asked a question a few months ago, I'm trying to figure something out and I just need to know when I posted it.

Thanks,

Marlene

Hi Michelle,

I understand totally what you are going through. I think I had every test in the book: colonoscopy, endoscopy, blood test, x-rays, CT scan, ultra sound, etc. etc. Everything came back normal but I knew I was definitely sick. I would cry when my tests came back normal because I just wanted them to find something. Finally, they did a HIDA scan on my gall bladder and that came back as having a malfunctioning gall bladder. I was soooo excited because I figured I had my answer. They took my gall bladder out and I ended up in the hospital a week later because I had such bad diarrhea and was dehydrated. All I did was cry, cry, cry. I did a blood test for Celiac. Negative. Cried again (and I used to be such a strong person!!) Anyway, I started the gluten free diet, got tested through Enterolab and am gluten/casein intolerant.

I never bothered getting biopsied because the specialist had been in there once for an endoscopy and never took samples so I really did not want to go through that again. I was mildy sedated and didn't handle the scope down my throat very well at all. Not only that, if it came back negative I would still be wondering if maybe they just didn't hit the right spot. As far as I am concerned, response to a gluten free diet is the best way to find out if gluten is your problem.

Hang in there. Negative test results don't mean that it's all in your head. There is a reason for all your symptoms and even if a Celiac test comes back negative, you could be IgA deficient or gluten intolerant. You could try seeing a good Naturopathic doctor. Personally, I find them more helpful when it comes to things like this.

All the best,

Marlene

A few of my symptoms showed up during pregnancies but the main trigger was when my husband left me for 5 weeks (and moved in with someone else). He came back and when the realization of what he had done hit him, he hit bottom and had to quit his job. Three months later he went back to work but we couldn't make ends meet so I ended up having to get a job as well. A few months later I had diahhrea for 6 weeks straight and the rest is history. So my main trigger was definitely STRESS.

BTW, it was a bit of a rough road but my marriage is wonderful now and hubbie and I are best friends.

This thread is very interesting. I can't believe how many of us were diagnosed with "IBS"! Anyway, here goes:

Childhood:

Occasional problems with constipation and diahhrea

very nervous and anxious

unco-ordinated in most sports

around age 8 developed a mild speech impediment (stuttering -- I am convinced this is gluten related)

night terrors

Late teens/ twenties:

Increasing problems with constipation and diahhrea

Upset stomach

increasing night terrors

Thirties:

diagnosed with IBS due to increasing gastro symptoms

develop lactose intolerance

depression

night terrors and anxiety

Forties:

Carpal tunnel syndrome, tingling in hands and feet

Suffered from bouts of diahhrea lasting weeks at a time (told by doctor that I had a nervous tummy and should take the afternoon off from work, also told "a lot of people live with diahhrea everyday and THEY manage")

Many other gastro issues intensify such as gas, bloating, gross floating stools

Continued to see gastro enterologist for 4 years, did numerous tests and he finally suggested counseling.

Gall bladder removed due to malfunction (did not have gall stones)

Became much worse after gall bladder removal, lost more weight, became malnourished

Began investigating gluten intolerance at the suggestion of my boss

Continuing anxiety and panic attacks

This past September:

Diagnosed gluten/casein intolerant through Enterolab.

Have been on the diet since July and doing sooooo much better, still really struggle with anxiety and cannot handle any stress (as I type this I am basically bent over my desk at work due to pain brought on by stressful situation here.)

I'm upset that it took so long to figure out what I have and that I had no help whatsoever from the medical community. However, I am thankful to finally know what is wrong and begin the path to healing!! Finally!!

Marlene

I would definitely say it's not huey. The trick is to get alongside a good health practicioner who knows what they are doing when it comes to homeopathy. A remedy that works well for one person might not work at all on the next. When my youngest daughter was a newborn, she did not seem to have a reflex to push out her stool when she needed to go and would hold it in instead. I went to our family doctor who told me we would have to wait until she was 6 months old and then put her on prunes. Meanwhile, she was only pooping once every 10 - 12 days!! A homeopathic doctor gave me a remedy for her and within 2 weeks she was having a bowel movement every day. I have also used it for colds, flus, ear aches, etc.. So, yes, if you get the right remedy, it works fantastic. If you don't get the right remedy, it won't do a thing for you. That has been my experience.

Marlene

Well, I am going to stop taking these homeopathic drops. I was doing soooo good and had not had diahrea for over 2 months. Now I am back to watery diahrea, pain after I eat, pain if I don't eat, etc etc. I was only doing 3 drops of this stuff a day -- obviously I just can't handle it. I have done a candida detox about 10 years ago (before I knew I was gluten intolerant) and I felt "off" for about a week but nothing like this. I can't deal with this on an emotional level either. I am so depressed. Finally, after months of feeling perfectly awful I was starting to feel half normal again and now I feel like I am back at square one. It's not worth it. Maybe I will try again in 6 months or so.

Marlene

Hello,

I went to see my Naturopathic doctor on Saturday and she started me on some homeopathic drops as part of my healing process. Well, I have been feeling awful and all my symptoms have flared up again. At first I was so discouraged since I was trying to figure out how I could have gotten myself glutened. However, after talking with her again, I find out that part of this homepathic remedy consists of a detoxifier. So what is happening is that as my body is healing, old bacteria and candida is dying off. When this happens it releases toxins into my bloodstream and this in turn makes my symptoms of gluten intolerance flare up again. This is called the "Herxheimer reaction" or healing crisis.

This made me think that sometimes this is what flareups are all about. As our bodies heal and old cells die off, we go through these mini health crisis where symptoms flare up. We might think we are taking one step backwards but actually it is part of the healing process. There is an interesting website which explains this at www.falconblanco.com/health/crisis/htm.

Meanwhile, it has been a rough week for me and the doctor has had to cut back my dosage of the drops since my symptoms have been so intense. I took 2 days off work but had to drag myself back in here today. This is sooo difficult. I am trying to remind myself that sometimes we gotta feel worse before we can feel better.

Anyone else ever research or hear of Herxheimer reaction before? What do you think? Does this make sense to you?

Marlene

You might want to look into a product called Anxius. I found it on the web. Please note: I do NOT know if this product is gluten free or not since I have not needed it since going gluten free. You could contact the company. I took it before I was diagnosed and it REALLY helped with my depression. My doctor had put me on Effexor but I had the most horrible side effects after just taking one half dose. They give you a little handout with the Effexor and it says in bold type "Call your doctor immediately if you begin experiencing any of the following" and goes on to list a number of side effects such as hallucinations, excessive sweating, panic attacks, vomiting, diahrea, tremors and shaking, etc. etc. I had every one and they lasted for over 24 hours. That made me look into something natural. I tried Anxius and within a few days, my mood began to lift. I was on it for about 6 months and can't say enough about it. No side effects either. Just make sure it is gluten free before you order it.

Hope this helps,

Marlene

The more I find out about the connection between gall bladder and celiac, the more shocked I am that doctor's don't know anything about this. I had a real bad feeling about getting my gall bladder out because I never had gall bladder attacks after eating fatty meals. This made me think that it had to be something else wrong with me that was making my gall bladder misfunction. I asked the surgeon, the GI specialist, the nurse at the Pre-op clinic, and who knows who else if there was any chance that having my gall bladder taken out would make me worse. They all assured me that I would be fine. HUH! Well, I guess there is no use crying over spilt milk (I've done enough crying in the last few months due to the whole gall bladder disaster, not knowing what the heck was wrong with me, etc etc). Now I'll just have to keep looking forward and doing everything I can to get better.

thanks a lot for all your replies, they have been very helpful!

Marlene