New To Forum: Gluten Free Since April 2012

[whitepine]

I've been reading a bit of this forum and so has my partner to try and find information and advice on celiac. Anyway, I decided to join in the conversation because it's difficult to get people to understand how I feel and actually get what I go through on a daily basis. So here I am!

After many years of being ill and finding some symptoms pointing towards a gluten intolerance I decided to quit eating wheat then I stopped eating gluten entirely.

I'm 25 now and I ate gluten products for my entire life even though I had problems with digestion ever since I can remember.

I had a severe bout of illness when I was 16 but I was only diagnosed with acute colitis and possible endometriosis. None of this was investigated further because of various reasons.

I've had doctors in the past tell me that it was all in my head and that I needed to go to a psychiatrist. This discouraged me extensively because I'd be incredibly ill and a doctor would tell me that it was just anxiety related or that I was suffering from IBS because I was in university.

It wasn't until I met my recent partner in October of 2012 that I actually started to push for better health. The reason being, he believed that I was truly ill and this wasn't something made up in my mind. Of course he had his doubts in the beginning he said because he didn't understand what gluten was. After observing a lot of my illness and also seeing me as a normal person at times and doing his own research, he convinced me to stop with the gluten entirely.

So in April of 2012 I started the gluten free diet. I haven't be diagnosed with Celiac and my doctor has offered to have me tested but it cost a fair bit and I am not entirely sure if it is worth the pain and trouble to start eating gluten again to get proper results.

After about two weeks of taking gluten out of my diet completely I stopped being nauseated, having frequent diarrhea, and being tired. It was quite amazing to experience such a change in my life at the time because I had spent years in the bathroom so to speak.

Everything seemed to be working out well, I learned along the way by accidentally getting glutened at times but I learned to always ask and always read the labels.

But after the first removal of gluten completely I noticed that certain symptoms either showed up or never got better. For example, I suffer from severe joint pain, abdominal pain, dry heaves and vertigo. We have thought that some of these symptoms are caused by nutrient deficiency, especially the dizziness.

I do suffer from anemia and I am trying to get that under control. That seems to limit the severe dizziness but nothing helps the joint pain, abdominal pain and dry heaves. There are things that come and go on their own at random.

I don't think it is associated with being glutened because my symptoms tend to be worse and there are more that happen when I eat gluten. I will get diarrhea, vomiting, severe vertigo, extreme exhaustion and stomach pain when I've gotten into gluten. My stool is often yellow and grey at this time and only returns to somewhat normal when I start to feel better. It takes me about a week or two to get back to normal after the 3 or 4 days that I am completely out of commission.

For years I have had problems with my bladder as well. I constantly have the urge to urinate as well as at night. Flank pain is a frequent problem when it is at its worst but I will get checked for UTI's and I don't have them?

I have high inflammation in my body at all times as well so I am thinking the bladder problem could be a symptom of this. It is also possible that the possible endometriosis could be a cause of this.

I find it quite difficult to be social with people especially if it involves eating because people usually have no idea what gluten is and what celiac is. So sometimes it's taken as some kind of fad diet when I get very ill when I eat products that contain it.

I also find it hard to explain to my partner at times, even though he is quite helpful and very understanding of my chronic illness, how this whole health situation affects my mood and emotions. I can occasionally feel helpless and very frustrated about the situation.

Well thats all I can really think of. I look forward to discussing various topics with you guys and I am sure you guys will be able to help answer some of the questions I have and will have along the way.

[1desperateladysaved]

I've been reading a bit of this forum and so has my partner to try and find information and advice on celiac. Anyway, I decided to join in the conversation because it's difficult to get people to understand how I feel and actually get what I go through on a daily basis. So here I am!

After many years of being ill and finding some symptoms pointing towards a gluten intolerance I decided to quit eating wheat then I stopped eating gluten entirely.

I'm 25 now and I ate gluten products for my entire life even though I had problems with digestion ever since I can remember.

I had a severe bout of illness when I was 16 but I was only diagnosed with acute colitis and possible endometriosis. None of this was investigated further because of various reasons.

I've had doctors in the past tell me that it was all in my head and that I needed to go to a psychiatrist. This discouraged me extensively because I'd be incredibly ill and a doctor would tell me that it was just anxiety related or that I was suffering from IBS because I was in university.

It wasn't until I met my recent partner in October of 2012 that I actually started to push for better health. The reason being, he believed that I was truly ill and this wasn't something made up in my mind. Of course he had his doubts in the beginning he said because he didn't understand what gluten was. After observing a lot of my illness and also seeing me as a normal person at times and doing his own research, he convinced me to stop with the gluten entirely.

So in April of 2012 I started the gluten free diet. I haven't be diagnosed with Celiac and my doctor has offered to have me tested but it cost a fair bit and I am not entirely sure if it is worth the pain and trouble to start eating gluten again to get proper results.

After about two weeks of taking gluten out of my diet completely I stopped being nauseated, having frequent diarrhea, and being tired. It was quite amazing to experience such a change in my life at the time because I had spent years in the bathroom so to speak.

Everything seemed to be working out well, I learned along the way by accidentally getting glutened at times but I learned to always ask and always read the labels.

But after the first removal of gluten completely I noticed that certain symptoms either showed up or never got better. For example, I suffer from severe joint pain, abdominal pain, dry heaves and vertigo. We have thought that some of these symptoms are caused by nutrient deficiency, especially the dizziness.

I do suffer from anemia and I am trying to get that under control. That seems to limit the severe dizziness but nothing helps the joint pain, abdominal pain and dry heaves. There are things that come and go on their own at random.

I don't think it is associated with being glutened because my symptoms tend to be worse and there are more that happen when I eat gluten. I will get diarrhea, vomiting, severe vertigo, extreme exhaustion and stomach pain when I've gotten into gluten. My stool is often yellow and grey at this time and only returns to somewhat normal when I start to feel better. It takes me about a week or two to get back to normal after the 3 or 4 days that I am completely out of commission.

For years I have had problems with my bladder as well. I constantly have the urge to urinate as well as at night. Flank pain is a frequent problem when it is at its worst but I will get checked for UTI's and I don't have them?

I have high inflammation in my body at all times as well so I am thinking the bladder problem could be a symptom of this. It is also possible that the possible endometriosis could be a cause of this.

I find it quite difficult to be social with people especially if it involves eating because people usually have no idea what gluten is and what celiac is. So sometimes it's taken as some kind of fad diet when I get very ill when I eat products that contain it.

I also find it hard to explain to my partner at times, even though he is quite helpful and very understanding of my chronic illness, how this whole health situation affects my mood and emotions. I can occasionally feel helpless and very frustrated about the situation.

Well thats all I can really think of. I look forward to discussing various topics with you guys and I am sure you guys will be able to help answer some of the questions I have and will have along the way.

Greetings,

You share some of my symptoms.

Anemia could have alerted myself or my doctors long ago that something was not right.

I am taking many supplements to keep me going. I do suggest nutrients to help recovery. I have been experimenting recently with sublingal Vitamin B. It does seem to help fatigue and heavy head that I get.

I am not sure how you know you have inflammation. I suspect I do espcecially at times. Some of mine is starting to go, I think and I went grain free 6 months back. That is about the same time as you.

I am finding I really like to stay home with this. I can understand what you said about the social life.

Many do without an official diagnosis since they will not eat gluten. I was diagnosed by a genetic test by an unameable company and it went very well for me. One didn't have to be eating gluten to take it. I too was not in the position to try a gluten challenge. Really the symptoms could be used alone (In my book) to proove a gluten problem. My test was trusted by my MD and my chiro. Together with my symptom changes, the test confirmed that I had celiac.

As far as still having symptoms and problems, I don't think it is unusual after only 6 months. I think my body is working on healing harder than ever right at this point. I suggest you do work on supplementing in hopes that will help to change some of those stubborn symptoms. One encouragement I have is that my highs have been getting higher. Sometimes I have to wait quite a while before they come. It also seems like when I am absolutely at wits end feeling worse, the highest high ever is just a day away.

Get Well **** (The * is my get well flower. I am still asking some artist here to make me a better flower to use.]

[Lady Eowyn]

Hi Whitepine and Desperateladysaved

Seeing a mention of inflammation, I have a strange version of it goes on. I associate it with trace gluten or soy/trace gluten - my waistband gets tight (I don't mean proper bloating, which I do also get) but also bra strap - the one that runs around ribcage and back. This digs into me where it wouldn't normally. This sounds rather ordinary written down but is odd because it has the effect of making me sore and happens rapidly - gone next day.

Also have struggled with low ferritin (kind of pre-anemia) and at times anemia for years. Have to take iron tablets and each time i stop them my ferritin slowly drops again.

I read on here somewhere that healing for celiac is a rollercoaster - and it is!!

Hang in there.

[GFinDC]

Hi Whitepine,

Sorry you aren't feeling well yet. Some of us have other food intolerances show up after going gluten-free. You may have to cut out other foods besides gluten to feel better. Nightshades are one food group that seems to cause joint pain for people. Soy is another problem food for some. Actually we can develop intolerances to any food.

Are you sure you are gluten-free? It doesn't take much gluten to set off a reaction, and the autoimmune reaction can last for several weeks. Kissng your BF before he has brushed his teeth well could be enough to make you sick. SHaring utensils and pots and pans with gluten foods coud make you sick also, or using a colander that was used for regular gluteny pasta before. Toaster need to be replaced or new ones gotten and used for gluten-free bread only. Meds and vitamins need to be gluten free also.

Here's some tips that might help. These are pretty restrictive in terms of food but if you follow them for a while you may feel better.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

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 gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

[rosetapper23]

I recently attended a celiac conference where the topic of cross-reactivity was discussed at length. There are some members on this forum who do not believe in cross-reactivity, but the speakers provided ample scientific studies and papers on the topic. What this involves is that when you first go on a gluten-free diet, your body is still inflamed and trying to discover what it is fighting against. It begins, therefore, to misidentify other foods as containing gluten when they don't. A chart of about 25 foods whose chemical makeup is similar to gluten-containing foods was shown in a PowerPoint presentation, and I noticed that a number of them were foods that I began to experience problems with after following a gluten-free diet. Personally, for me, if I eat brown rice (which includes brown rice noodles), I become practically crippled with pain in my joints--I can barely make a fist with my right hand. It takes only about an hour before this particular reaction sets in and takes at least four days to get better. I strongly suspect that you're ingesting a food that your body has misidentified, and this is causing the joint pain and inflammation (and possibly the dizziness). The only way to figure out what that food is, unfortunately, is to eliminate just about everything and add foods back in one by one. Generally, fruits and vegetables (except nightshades), as well as meats, are considered safe. By the way, coffee is a common thing that the body misidentifies as gluten. This made me sad to learn. It was pointed out at the conference that if a person still has symptoms or continues to have nutritional deficiencies after following a gluten-free diet, a cross-reactive situation needs to be considered. After nearly nine years on a gluten-free diet, I still have difficulty absorbing fat-soluble vitamins. So....I gave up coffee two weeks ago and am hoping for the best.

Welcome to the Forum....and I hope you continue to feel better!

As for social situations, we celiacs tend to ALWAYS bring our own food to any social gathering. You shouldn't feel ashamed to do this, and, believe me, most people will understand. If the social event is at a restaurant, simply call in advance to know whether or not you would feel safe eating there or if you'll need to bring your own food. Over time, you'll feel less conspicuous and nervous about doing this. It's a lot less traumatic then getting glutened!