New Here; Asking For Opinions And Help

[positivenrgfairy]

Hi everyone. This is my first post here; I have been reading around on the forum for a while and everyone seems so helpful, I wanted to post some questions.

First, let me say, I know your immediate response will be to go to a doctor for diagnosis. Here's the deal - I don't have health insurance, I make $25K a year and I am being honest with myself when I say I am not going in to get all those tests done.

So, I just wanted to get that out of the way; I know you can't really diagnose me over the internet, and I'm not asking you to; the symptoms for this disease seem to be so many and varied that it almost seems pointless to ask. However, I just want to know if anyone else has experienced these particular symptoms, before I swear off biscuits and chocolate gravy forever. (until I can find a good baking substitute)

A brief history:

I battled severe depression as a child and as a teenager (starting around age 7) and was later hospitalized as an adult for depression. In conjunction with the psychological symptoms, I developed a very serious eating disorder as a way to combat constantly "feeling fat" which I am now linking to the severely bloated feeling I have experienced for years after eating gluten.

I have extremely long and painful periods, which I have read is linked to an inability to absorb vitamin K. I have also long battled fatigue, nausea, painful persistant heartburn, and constipation.

So, it seems I do experience some of the symptoms of at least a gluten intolerance, but I don't have a problem with not gaining weight which seems to be a telltale sign. I'm really short and I'm a size 12. Are all celiacs really skinny or do some people experience weight gain or other difficulty managing weight?

I've also occasionally experienced an inexplicable rash on my arms and legs that flares up in times of high personal stress; probably not related, but wanted to mention it.

The true test is thus: I quit eating gluten a few weeks ago and noticed how much better I felt. I have cheated a few times in the past week or so and after eating wheat gluten products got sick as a dog, "felt fat" again and got b%$@#y with my husband and friends.

Obviously, if it makes me sick I won't eat it, but how do I know if I need to avoid gluten completely (ie no soy sauce) or just avoid products when gluten is one of the main ingredients (ie bread and pasta?)

I feel better without it, and my family says they can tell a difference in my mood and my appearance (I can too) which makes me think I do have a small intolerance to it, but should I even consider the possibility that I'm celiac?

Thanks for hanging in there through this long post. I hope you guys can help answer some of my questions.

[mushroom]

Probably the most obvious way to look at what gluten appears to be doing to you is to consider this:

If a medium amount makes you feel not so good, a large amount makes you feel terrible, then even a little amount is going to have an effect on you, no matter how much you may or may not be aware of it. You would probably find after going totallly gluten free that even a little bit had a big effect on you, after your body became relieved at not having to deal with it at all. Listen to your body, it is telling you it does not like gluten. This is not addressing whether or not you are celiac but whether your body tolerates gluten. Cut it out entirely, including the gluten-containing soy sauce (use tamari instead) and see how you feel. That is the best test. There are many here, including myself, with no diagnosis, who would never knowingly consume another crumb of gluten. We may be celiac, we may be gluten intolerant, but if you can't afford any testing to find out then stop eating gluten and see what happens.

In answer to your other question, there are just as many overweight celiacs as there are underweight celiacs. It is a myth that you have to look anorexic to have celiac disease. For many of us, when we are not getting the proper nutrients from our food the body goes into conservation mode like we are starving, and stores fat.

[txplowgirl]

I am what I consider to be an undiagnosed celiac. I have been ssooooo sick since I was 7 or 8 years old. I am 45 now. I was dx'd with fibromyalgia last year and my dr told me that a lot of fibro patients have food allergies. In my research I have found that I am gluten intolerant. I could care less if I have a peice of paper confirming celiac.

I have been overweight my entire life. 205 lbs at 14 is not fun. I have been that weight up until I went gluten free. Not only have I lost a lot of my stomach problems as well nurological (spelling) problems but in the last 5 months I have lost almost 30 lbs without even trying.

If you are having a lot of problems and you know going gluten free would help, why wouldn't you?

There is no reason in the world I would ever go back to eating gluten.

[buffandpuff]

I'm also new here. My nutritionist at the gym recognized some "symptoms" we were discussing going over my diet. I am also overweight, and generally have not felt well since my hysterectomy 11 years ago. In March of this year, I got some food poisoning and have had difficulties since then -- not able to have dairy, pain in chest when eating dense food like meat, etc. My doctor won't run the blood test because there's no history of celiac in my family, so I have decided to do an elimination on my own. Honestly, it's been 4 days already and I feel great. I am very much into holistic, etc. since I had a really sick dog with various food allergies, so I've been doing my research. A couple of things I noticed already -- not so much sinus "stuff" at night, sleeping better, more energy, the tingling in hands and feet greatly reduced, no heartburn or pressure in chest, and not so itchy. Is it normal to feel this good so fast? I assume learning to cook will get easier with time. Tried some eggplant parm tonight with gluten free all purpose flour, olive oil and fresh tomatoes -- wasn't too bad, a little bland. Any tips?

[positivenrgfairy]

the tingling in hands and feet greatly reduced,

OMG you have that too!?!?!? I have been vegetarian off and on and it always resulted in numbness of my hands and feet and extreme exhaustion. After starting to rule out gluten from my diet, I decided I just couldn't take being vegetarian and gluten free, and the numbness went away when I started eating meat again.

As for the eggplant parm, I was hoping to make an experimental batch myself this week! I was going to use a light dusting of corn meal?

I haven't ventured into the various flours and starches out there quite yet.

Thanks for your help everyone.

[positivenrgfairy]

If you are having a lot of problems and you know going gluten free would help, why wouldn't you?

Because it could also be the number of other chemicals I have inadvertently cut from my diet bc gluten is in a ton of processed foods. Because I don't want to believe that I can never eat pizza from papa johns again. and because without knowing how to efficiently test that its gluten causing these problems I might be wasting my time and energy.

how can I be sure that gluten is the culprit?

[txplowgirl]

I can understand all that definetly. But, it seems to me you have done the test. You felt better, your family says you were a diferent person. A lot of us including me, have lost our depression and anxiety issues as well as pain. I went from a snarly witch bit** as my sweetie called me to a halfway normal person.

To me, just my opinion mind you, that is not a waste of time and effort. As far as Papa Johns go, you can make a good pizza at home with all the alternate gluten free ingredients.

As far as your rash, that could very well possibly be dermatitis herpeteformis, which is a celiac symptom.

As far as an official test. I didn't get tested because I couldn't afford it either. With all the stomach problems and cancer that runs in my family. I said to heck with it. If going gluten free dosen't work, then I don't have a problem with it. I have been gluten free for almost four months now other than having a slip up now and again and I won't ever go back. Again, just my opinion.

I hope you feel better.

[ang1e0251]

Because it could also be the number of other chemicals I have inadvertently cut from my diet bc gluten is in a ton of processed foods.

You could be right but seriously when you cheated you felt bad again, isn't that kind of an obvious cause and effect?

Because I don't want to believe that I can never eat pizza from papa johns again.

There, that's you're number one reason. But the time comes when we have to weigh our whole quality of life and future health against what I "want". You have to make the most mature decision for yourself and the people who love you about what your health choices are going to be. I knw, the addiction is strong.

and because without knowing how to efficiently test that its gluten causing these problems I might be wasting my time and energy.

You do know how to test the problems against gluten consumption in an efficient manner, an elimination diet just like you've been on, and a gluten challenge, just like you've been doing when you cheat. Your body told you by reacting to the gluten that it cannot be well when you eat gluten. You just don't want to believe it yet. It can be helpful to keep a food journal where you also note any symptoms. Really, seeing it in black and white can really turn that switch in our brain that brings us to reality.

how can I be sure that gluten is the culprit?

You can be sure because your body doesn't lie about gluten.

What have you got to lose? I am also self dx'd for the same reasons as you. I have no doubts about it or regrets. You can have a lifetime of good health, it's all in your hands.

[buffandpuff]

Actually I did have a little reaction, but when looking back on what I did wrong. My husband, trying to be helpful, cooked my spaghetti in the same pan that he made his w/o really washing the pan. Boy did I get itchy within an hour and gas again. Yikes.

I really have to say that 5 days into this I feel fantastic. I haven't felt this good in 17 years. I'm sleeping better, way less gas, less mucus in my sinuses and stool. No more itchies, etc. I did read that Celiac could be brought to the surface by a virus or illness. All of my symptoms were precipated by food poisoning, which resulted in a hiatal (sp) hernia, etc. Since going gluten-free, the pressure in my chest has been greatly reduced and I have not had to take Prilosec all week.

Now I just have to find a shampoo and haircolor since all my clairol products contain gluten.

[positivenrgfairy]

Thank you everyone for your kind words. I feel that ultimately I am making the correct self diagnosis, regardless of the severity of the gluten intolerance. A rose by any other name, right?

Although it is difficult to accept, this is my reality now, and the foods I used to go to for comfort

(i e pizza and macaroni and cheese) are ultimately only creating a vicious cycle for me. and it's all new to me so I am freaking out a bit about the lifestyle change that is immanent. But it sounds manageable, and I am glad to have this forum to turn to with issues when they arise. I wrote this post a few days ago and have since gone 100% gluten free - even without soy sauce and ketchup (only a few days mind you, but I have felt an incredible difference) so despite my reluctance to accept it, gluten does seem to be the problem.

Thanks again for your encouragement.

~ Positive Energy Fairy~