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KIMO123 Posts: 11
5/8/07 2:48 P

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I am the newbie you were asking for. Yes I have always had a big problem with constipation.But who would have ever dreamed Celiac. But I have always had alittle trouble with anemia.Then about 2 1/2 years ago I couldn't hardly put one foot in front of the other. So tired and seemed like I was having signs with diabetes again, because when I was pregnant with my youngest one I had gestational diabetes and soon as she was born it went away.I thought it had came back. When I went to the doctor they did alot of blood tests. My blood was so low. 8.2 They didn't find out why until March of 2007. Now that i am gluten free my bowels works 90% better.

 
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4/26/07 2:07 P

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Yup, that's right, I wasn't tested not only because of the constipation, but also my parents and doctor(s) at the time thought I was looking for attention! I'm serious and my doctor gave me a referral for counselling. Never went because I knew I wasn't the crazy one!

To all those whose doctor's won't give you a referral to see a specialist: keep persisting, keep pestering etc. Don't stop until you know for certain what is wrong with you. It might not be celiac disease, but it certainly be something else. Doctor's aren't living in our bodies to see how we are feeling, so keep persisting. If he/she doesn't after a while, it you can, find another doctor. We deserve to be well and happy just like the rest of the population!

Pyeway

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DOTSLADY's Photo DOTSLADY Posts: 10,024
4/26/07 1:29 P

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Okay okay. Great to know.

But these doctors didn't TEST you for celiac BECAUSE of your constipaton, right? Most of them might test because diarrhea is on your symptom list (and how many were IBS-Diarrhea for years without a test too?)!!!

Where's the newbie who's only symptom was anemia ... are/were you constipated? Just wondering. Forgive, me I don't have time to go back and find your name! Sorry!

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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4/26/07 12:57 P

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Hi Dot. Thanks and your welcome. I was diagnosed while constipated! I NEVER had diarrhea while undiagnosed, hence the doctor doing the biospy on a fluke. He had no idea what was wrong with me, ran out of tests to do and decided for the heck of it to do the biopsy, which came back positive. He even said he didn't think I was celiac becuase all my symptoms were backwards from all others he tested over the years! That's me, backwards!

Because I was so sick as a kid and then into early adulthood, I went thru SO many tests. You name it, I've had it done at least once! I've had so many colonoscopies done over the years, I could probably perform the test on someone - any takers?? Haha. Needless to say, I've learned a lot over the years about my body, different tests etc and I've also worked in the medical field for years. I can pretty much ask someone a few questions, and tell them what to ask their doctor, or for what tests.

I had my appendix out almost 17 years ago and when my daughter casually said to me in passing "mom, it hurts my stomach when I breath" that she needed her appendix out. We had to go for over 14 hours before someone decided maybe she did. It still took another 12 after that to actually get it out. My kids trust me and my knowledge and I now find neighbors and in-laws ask me a lot of questions before they go see the doctor. I don't say I know every thing, but I sure know a lot.

Anyway, that's my story and I'm sticking to it.

Pyeway

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KJEANNE's Photo KJEANNE SparkPoints: (39,576)
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4/26/07 10:22 A

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I was diagnosed with Dermatitis herpetiformis in my early 20ís. Itís interesting to note that DH is listed as a symptom of Celiac disease at this site: http://www.cureresearch.com/c/celiac_disea
se/symptoms.htm

One of my symptoms is constipation.


Do not look where you fell, but where you slipped.
African proverb


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DOTSLADY's Photo DOTSLADY Posts: 10,024
4/26/07 9:16 A

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Pye - great info on the blood tests - I never knew that! Thanks!

Martier - so your doc said it's a "sensitivity" and then advised you to go on a gf diet? What I've learned is that "sensitivity" means "allergy" - and that "intolerance" means "autoimmune disease." But people are not consistent in their use of either reference.

My first thought was: have you been gf in the past and or now and do you feel better? Ultimately, wouldn't that be the deal breaker/maker? Personally, my celiac was slow growing ... from constipation throughout most of my life, then the more whole grains I added, the more I became "regular" -- I was finally diagnosed at a time when I was "going" 3x/day or after every meal (fatty stool, not diarrhea). What doctor ever tests for celiac on a person with constipation?

... which makes me want to ask the question: has anyone been diagnosed while constipated?

My point: maybe you're "sensitive" now, but you may grow into "intolerance" with continual gluten ingestion? And I'd ask if simply "cutting down" on gluten makes a difference (I'm guessing it won't).

P.S. paying for your test results is ridiculous! (Unless they're so petty they ask you to pay copy fees ... is this a BIG practice/hospital?)

Edited by: DOTSLADY at: 4/26/2007 (09:25)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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MARTIEROSE Posts: 101
4/25/07 8:49 P

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You're right of course. I am going to sit down and make my list of questions. First, he can do all the talking. Then, if I still have questions, I will ask him.

I never got the results of the tests until a few weeks ago, and I need to know what they mean. They didn't give me the results of the tests. About three weeks ago I felt that I needed to ask for the figures. I had to pay to get them. I pray that tomorrow there can be good communication.


Edited by: MARTIEROSE at: 4/25/2007 (20:51)
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4/25/07 7:12 P

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I do want to give doctors the benefit of the doubt. They do see lots of patients and I bet they donít see too many with the problems we have. They are always under the gun, from the HMOs and administration, to spend the least amount of time possible with each us.

So I figure itís my duty to make sure my doctor knows that I am an usual case and she is just going to have to take more time with me to figure out what treatment is best. I donít expect her to have the answers at hand but to work with me to figure out what works best. That may take some time. I always bring a list of questions and keep track of my symptoms and bring that information to my appointments. I also discuss any research I have done, asking for her opinion on the different therapies I have read about. But in the end, I make the decision about my body and what I will and will not do. My doctor is my partner in making that decision.


Do not look where you fell, but where you slipped.
African proverb


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MARTIEROSE Posts: 101
4/25/07 3:16 P

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He did not refer me to a dietician. He just told me to go on a gluten free diet. He told me that my blood sugar was ok and to eat anything I want. I learned that my fasting bs was 123--not good. Everyone I know who has bs over 100 gets put on a blood glucose monitor and a lower carbohydrate diet, to avoid pills. This doc appears to want me to be classified as diabetic. Is that because he's building up a practice?

You can be sure he will get lots of questions tomorrow. Thank you very much for helping!

With God, nothing is impossible!


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4/25/07 2:37 P

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I find doctor's so strange!! Did he offer any suggestions or give you a referral to a dietition? I'd be after him for the referral for a dietition. That way you can find out first hand what you can eat, as opposed to those who have GF. Can you eat oats? Most likely. That will help you out a lot if you can. For those of us with the "allergy" oats is iffy. Nobody can determine if we should or shouldn't. I don't because it isn't worth it to find out.

Ask for a referral. Get some education/information and get healthy.

Is a sensitivity just as hereditary? I'd be asking a LOT of questions. If you don't get answers, ask again, and again until you do. I didn't get diagnosed until I finally put my foot down and told the doctor I wasn't leaving her office until she sent me to someone. She finally did.

All the best.

Pyeway

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MARTIEROSE Posts: 101
4/25/07 2:15 P

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Oops, I made a typo. I meant that he said that I was gluten sensitive, but not bad enough to be classified as celiac disease.



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4/25/07 1:41 P

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Gluten sensitive, but not gluten sensitive? A false/positive?? Did he/she mention that at all? Did you start a GF diet before you had testing?

Some people are just sensitive to gluten, such as bloating, gas (minor symptoms) while others of us are allergic (extreme symptoms - chronic diarrhea, weight loss, hair loss, miscarrages etc). If undiagnosed, we could eventually die as we then are no different to those in Africa, for example, who are starving to death every year. Yeah, we're eating, but we're not absorbing ANY nutrients of anything we eat, it just goes right thru us.

I would ask you doctor, hopefully your specialist, to explain again to you the results, or ask for a referral to see a dietition. They should be able to explain the differences to you in more details, or have some materials on the diet. Do you have a local chapter for the Celiac Association that you can call? If not, definitely talk to your doctor again.

Pyeway

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MARTIEROSE Posts: 101
4/25/07 12:39 P

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My test says, under Endomysial Antibody, IgA with reflex to titer (00-50734), that my test results were: 179mg/dL.

The doctor said I was gluten sensitive, but not high enough to be gluten sensitive. Can you explain that?



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4/25/07 11:09 A

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Okay, here goes: Immunoglobulin = plasma proteins; serum = protection against organisms; endomysial = watery portion of blood that separates from blood during spinning of the sample, or the blood sitting too long; antibody = within response to an specific antigen (antigen neutralizes or destroys organisms that are threatening to destroy a balance in your system); IgA is part of the hemoglobin (blood); reflex = to respond to stimuli; and titer = standard of strenght the cell has to destroy any antigen.

So, basically, they check plasma proteins for the type of strenght/response/reaction time etc your body reacts to antigens in your system, namely gluten. If your body doesn't have the right type/strenght etc to fight off certain antigens, you have a response to it - be it diarrhea, vomiting, hives etc.

it is the same as those for people who are allergic to bees etc, they respond in a way that their body cannot handle the sting itself, therefore their bodies go into overdrive to fight the antigen (negative substance in your body).

Brenda

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MARTIEROSE Posts: 101
4/25/07 10:48 A

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Can anyone help me on reading the results of a celiac disease panel test, particularly the part that says IMMUNOGLOBULIN A, SERUM, Endomysial Antibody, IgA with reflex to titer (00-50734)?

With God, nothing is impossible!


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