Being tested ... and sick ...

[designsbycm]

Hi all I have over the past year or so developed some aggrevating, itchy skin rashes. Then, over the past few months, I have bouts of diarrhea/constipation.

What I'm wondering from others here in the forum ... I got REALLY exhausted this past week and that drove me to the doctor. He's testing all kinds of stuff but is also doing a Celiac Panel on me. Does EXTREME exhaustion and a little woozy/drunk feeling and constant thirst sound familiar to any of ya'll?

Thanks! I should have my results in this week.

[cruelshoes]

Check out the symptoms lists below. The things you describe can be indicative of celiac, among other conditions. CD had upwards of 200 symptoms, and in some people presents with no symptoms at all. Your doctor is wise to be doing the celiac panel. I hope you get some answers from the bloodwork. If you feel comfortable, I hope you will share the results with us so we can know how things turn out.

http://forums.glutenfree.com/topic478.html

http://forums.glutenfree.com/topic61.html
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[aklap]

Hi CM,

Welcome to the board.

Do you know if diabetes was on the list the doc tested for? Woozy, thirsty - makes you wonder if there's a blood sugar issue.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[designsbycm]

Hi there. Yes, I'll share my results as soon as I get them

And, yes, diabetes was one of the tests in the blood work. So, should know something maybe today even

Thanks!

[designsbycm]

Hi there all. Ok, here's what I got back from my blood test:

Endomysial IgA - Negative
Tissue Transglut - 3.3 (Ref Range: 0-19.9 units)
Gliadin PEP Screen - 8.4 (Ref Range: 0-19.9 units)
IgA - 122 (Ref Range: 70-400 mg/dl)

And, also, I was not eating "bread" daily before this test. So, not sure if that matters. I know I ate some wheat containing items a few days before and all; but I never eat bread daily.

So, let me know what ya'll think. Thanks!

[cruelshoes]

For all intents and purposes, those bloodwork results are negative. You are not IgA deficient. However, you mention that you do not eat bread on a daily basis. What is your intake of wheat/barley/rye/oats? You need to be eating decent amounts of gluten on a regular basis to get the bloodwork to show positive results. If you are not eating much gluten, the tests will be less informative.

Gluten Challenge - how long/how much?
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[designsbycm]

I just naturally don't eat much gluten on a daily basis. I rarely eat bread or any fried foods and such. I do eat things that contain wheat ... or so it says on the labels. But, I seem to notice that after eating at like Burger King, as I did yesterday, and making homemade gravy or something, that I break out on my forearms and behind my knees and such and start itching about 3-5 hours after eating it. So, even though those tests came back negative, I have a strong suspicion that it's because I just don't eat much of gluten daily anyhow. I eat mostly fresh foods as I can. Then, when I do eat gluten or wheat, I have a breakout. I don't have an allergic type reaction; just break out as stated and then a day or so later, have diarrhea usually.

So, anyhow ... if this all keeps up, I'm going to the Dermatologist next and get her to do a biopsy and then there will be no further speculation and I will have proof as to whatever this is as it's better than blood work in a lot of instances if you have something like Subcutaneous Lupus to prove what you have. So, that's my next stop

[designsbycm]

Well, hello all ...

Decided to write back and let you know my outcome. I had posted that I had the complete Celiac Panel of blood work. It was negative.

After still having the symptoms, i.e., hives, diarrhea, skin rashes, severe bloating, extreme exhaustion, etc., though my blood test was negative, I then remembered that when I was 19 (I am 40 now) and had to have emergency gallbladder surgery, my surgeon did extensive blood work on me at that time because I was so young to be having gallbladder removal surgery. He told me at that time that I had Spherocytosis, which is a rare blood disorder in that my red blood cells are actually ball shaped instead of flat like a quarter. It alone can cause you to lose your Spleen and have miscarriages and extreme exhaustion.

So, researching on the web ... I found out that because I have Spherocytosis, and my blood cells are just not normal, computerized blood tests can easily come back as false negative. The blood of someone like me should be tested with human interaction.

So, that explains it all for me folks! Just thought I'd share this with you in case some of you "still" have problems with a negative blood test. Sure, I could go on and get the biopsy, but why bother as I find so much relief from not eating gluten that it has to be Celiac. I'm improving each day and life is beginning to be good again.

Good luck and hope this info was helpful to some. And, don't forget to press your doctors as they're usually not very knowledgeable about rare blood disorders such as mine.

[ostrich]

Woah! Way to research! I never would've made that kind of connection. Are you going to have your blood tested "by hand"?
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[aklap]

Hi CM,

Thanks for the coming back with the update. How interesting! Hopefully your condition is not life threatening or harmful and any other way.

Did you doc suggest getting a biopsy?

One piece of advice - carefully consider the ramifications of official diagnosis vs no diagnosis. Living in No-mans land is not always the easiest. It's very do-able - I've been doing it for almost 6 years. There are 2 forces you must contend with: yourself and the outside world.

Depending on the type of person you, could very well manage and stay true [not cheat] to the GF diet. For me, this has not been much of an issue. I have no desire to willfully cheat. Gluten and I don't get along - so I stay away from it. Some people can not function this way. If they don't have that piece of paper, they don't have the problem and continue eating gluten. Heck I know some with official diagnosis' that don't follow the diet.

The outside world can put pressure on you as well. Friends, family, co-workers - all can play a part in this. "Ah...a little bit won't hurt you..." or "Come on, have some pizza!" is what we hear quite often. This then comes back to you to say - NO! Are you strong enough to do it?

Other outside influence is the medical world. Often times medical professionals will discount your gluten free status with having "documented" proof of you needing it. I know - I've had all the tests for CD and they've come back negative, yet thru dietary trial I know gluten is not friend of mine. Having an official dx can help in medical situations. You certainly have a reasonable explanation for the false blood work [at least the the blood tested by computer and not by humans].

The choice is yours - just consider your options carefully

I'll leave with these links...

Suspect CD, is dx worth it?
Compelling reason to dx by biopsy Biopsy or Not to Bipsy - That is the question.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[designsbycm]

Yes! That one is something to think about. And, think of all the folks who probably get "negative" blood tests all the time for other diseases or just general blood work who may have something weird like me and never get an accurate diagnosis. Sure makes you think! And, doctors sure don't know it all. I detest having to go to the doctor as most of them seem like there's a lot of "air up there" and they're just there to get their paycheck I walk out sometimes thinking and knowing I'm much smarter than they are

Answering the other lady ... No, I don't feel I need the biopsy for an official diagnosis. I've actually been told for years that I have Lupus or Mixed Connective Tissue Disease ... but negative blood work on those (which of course I now know why it was negative as well). But, the doctor "thinks" Celiac is what I have and now I just got my own confirmation of it ... or at least a problem with gluten. I now think that all the time I was told I have Lupus or Mixed Connective Tissue Disease that I've probably just had Celiac and nobody ever thought of it until now. Only time will tell. But, if I stop eating gluten, I get WAY better. Can't wait until I've got some time under my belt so I can get healed up completely.

I don't feel the need to expose myself to a biopsy for proof that will only matter to some knuckle-headed doctor. Sometimes the patient knows far more than the doctors, and as much as I've experimented over the past few months with myself, I think I've gotten my own answers, without having to pay a few thousand dollars to a moron I am an anti-doctor person and they can shove it up their butt for all I care I know that if I don't eat gluten, I feel better and that's certainly got to account for something

Tempation into veering away from the gluten free diet ... nope; not tempted. My reason is that I've never been a bread eater nor a sweet eater. In fact, about 2004, I went on the Atkins Diet and stayed on it for years. When I came off it in June 2006, after moving from Florida to South Dakota, about one year later is when I started having more problems ... especially with the skin rashes, blood stools and extreme bloating. Why? Because I came off the "healthy" eating of Atkins style diet and was eating out in restaurants.

So, just eating naturally healthy foods is easy for me as I've always eat that way since I was a child. Heck, as a 5-year old child, I was eating raw garlic and loved it! I've always steered clear of pre-procesed foods and restaurant foods. I've always found that getting restaurant food was rather disgusting because I can just imagine how nasty it is in the preparation kitchen and my food containing who knows what I've never been crazy about Pizza ... so that's not a biggee either. I love fresh vegetables, salads, fruits, cheese, etc., all natural stuff ... and being a southern gal where eating out of the box was a sin, I'm a real good cook So, this will be rather easy for me and not a burden. If it means getting rid of these terrible aggrevating skin rashes, then so be it

Thanks for the replies all and hope my info is of help to some

[sweetea]

I'm glad you are feeling better and figured out how to help your health!

And I think it's interesting...another person with a wheat sensitivity/celiac with gallbladder problems...

[designsbycm]

Hey there! I was just looking to reply to one of your posts ...

I had gallbladder attacks from the time I was 10 years old until it was removed at 19 (am 40 now). I can certainly describe them to you and help you see if that's what you may have:

- no bloated feeling in the upper abdomen
- a feeling of wanting to take some Pepto Bismol, which never helped
- a pinching, pain in the upper right abdomen area (looking down at your belly) that was acute and made you feel like doubling over
- an intense gaseous feeling

What used to make my gallbladder move and hurt was chocolate milk and steak and heavy fatty foods like that, which I ate frequently back then Finally, one day at work, I had chocolate milk for breakfast on the way in, and had to go to the hospital. One of my co-workers rushed me over there because the pain was finally unbearable and I was spitting up bile type stuff. I remember throwing myself over a chair because I felt the need to double up and try to find relief.

Now, also since that young age, I used to take Pepto Bismol for GERD ... at that young age! I went from Pepto, to Maalox, to Tagamet, to Zantac, to Prevacid, which I am still on today. I'm hoping that the GF will get rid of my GERD; but, I also have a Sliding Hiatal Hernia which they found at the time of removing my gallbladder. So, I may just be doomed to have GERD forever

But, I don't believe that the GERD is in direct correlation to the gallbladder attacks as I think my Hiatal Hernia was the cause of the GERD back then. But, I can tell you ... that if you have a gallbladder attack, a true one, you will know it as it's like somebody stuck you with a knife and twisting it around in your gut. It hurts pretty bad and just gets worse with time.

I agree with some of the other folks too about GERD it that certain foods cause it. I have found, in myself, that eating anything with sugar, i.e., candy, ice cream, etc., makes me produce more acid and thus the GERD gets bad again. In addition, of course, the gluten causes that too. I can eat the hottest, spiciest foods and not be bothered with it ... unless those foods were to contain sugar and/or gluten. But, that's just me.

So, hope this helps you!!! Good luck and take care.

[sweetea]

Well I what I think about the whole gallbladder wheat sensitivity/celaics thing is that gluten causes inflamation for a lot of people... that can include inflamation of nerves, sinuses, gut/bowel, etc. I'm thinking the immune system in some people just goes crazy when it senses gluten (some of this is not detected via b/w) ... if it goes on for long enough it can cause some damage. I was having some esophageal symptoms...like food was getting caught ... that's why I had to have the endoscopy done to look for strictures. None were found but maybe that was 'pre hiatal hernia' and had I kept up my pace with the gluten consumption like I had been it would have gotten to that stage.

With my gallbladder issue I think the ducts AND my gallbladder were getting to the point where the tiny stones I had/have were not moving through so smoothly because that whole system was inflammed. Now that I'm off the gluten since early November the inflamation is down and things are able to work easier. I've also cut back on fat grams because I'm not eating the icky fast foods like I had been. So that has helped too.

My gastritis/reflux feeling is almost all gone...it's been 3 and half months GF. Also my 'nervous tummy' issues I had always had have subsided too...not completely gone but I feel more 'normal'.

I think when things started to go bad for me was when the babies were small and I could not take the time to perpare my healthy meals for myself anymore. I was always really concerned about my weight so I ate a mostly "Asian" type diet consisting of lean meat and fast cooked veggies. When the babies came along I was eating McDonalds cheese burgers, fries, eating take out a few times per week (miss my fav Mexican restaurant!). It was a nutritional nightmare!

Now the last 3 months I've gone back to the way I used to eat minus the soy sauce....and other traces of gluten I was getting in convience foods. I had pretty much been 'low gluten' my whole adult life and just did not know it...

[designsbycm]

Yes, I agree! I think that gluten "does" cause trauma probably to everyone's system, and just some more than others. And, yes, me too! I had eaten gluten free most of my life and didn't even know it. And, like you with your babies, I had eaten great while living in Florida. Moved up here to South Dakota and started eating out and went straight downhill.

But, I'm excited now and can't wait until I have enough time under my belt like you in that I recover and feel like my old self again. I haven't even been able to get on the treadmill and weight machines in a couple months. But, looking forward to getting back to normal.

Thanks for your reply and good luck with your gallbladder!!!