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Blood Tests


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32 replies to this topic

#16 kalo

 
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Posted 31 May 2004 - 03:11 PM

Hi Chantelle. If it's not a gluten free cookie you are eating then it may not be the dairy you are reacting to. Please DO the test from enterolabs. I found out in my search that only 10% of the worlds celiacs have the classic symptoms. Most doctors are not educated in this disease as they don't know how prevelent it is. You are right in that you can self diagnos and self treat. The other thing to do is to try the diet for 3 months and see what happens. If you feel better you have yo ur answer. The stool test would prevent you from doing that uneccessarily. Hugs, Carol B
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

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#17 Guest_NitaB_*

 
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Posted 31 May 2004 - 07:55 PM

Carol,
First of all, thanks for your support and good wishes! Yes, it's a bit easier knowing others who are in your shoes.

Chantalle,
I feel so for you! :( It's worse when you have no one who understands, and Dr.'s who seem to not agree! I go to my reg. Dr. on the 8th, and I'll be very curious to see what she says! The GI Dr. seemed sympathetic to my pain, but truly couldn't tell me anything, other than to try a gluten-free diet. Dr.'s just hate to not believe their tests! Medicine to them, should be more accurate, so they think it is! Mine thought the lesions were celiac, but the blood was neg., from the best lab! So, he just can't figure out what it is! At least he suggested the gluten-free diet, so was amenable to the trial. If I figure out for sure it's celaic, due to diet, I will be sure to talk to both Dr.s to help them diagnose other patients in the future! I can be pretty agressive about something I'm passionate about!

So, if I were you, I'd just stick to gluten-free, dairy, and egg free, and hope you feel better! Everyone here seems to think it may only take 2 or 3 weeks or so, to feel better. I'm trying very hard to do gluten-free, with no more mistakes! I also just gave up dairy, but had egg today! If I suffer tonight or tomorrow, will give up egg, too! I intended to give up egg, with the others, but had devilled eggs, and potato salad at a barbecue today. I brought my gluten-free mayo and just put what I wanted in a portion saved for me to finish. So far, I don't feel too bad, after this meal! It was nice to have the family support for helping with food for me. Besides the eggs and salad, I had fruit, jello, and a plain hamburger patty. Was plenty for me, and I felt like a part of the group. One daughter even bought and made gluten-free brownies for me! She was in charge of dessert, and made other brownies, too. But, how nice to have both daughters plan ahead, just for me!

You and I are new to this, so have a lot in common! Keep your chin up, and let's keep posting, to keep track of our successes!
Nita
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#18 kalo

 
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Posted 31 May 2004 - 08:28 PM

HI Nita. My doctor already forwarned me that a negative blood test doesn't mean I don't have it. He doesn't know about enterolabs or he would have told me I'm sure (although he tries to save his patients money). He will hear it from me though. :-)I've never been able to notice symptoms from what I eat. Unless of course it's nuts/corn (whole) which have a tendancy to cramp my stomache and go right through me. Soaking nuts according to westonaprice.org do better with me. I've been very sick for to long but was never able to identify food as a culpret. That's why the mention of gluten-free suprised me. Not any more now that I've read about it. Some symptoms are delayed so you might not beable to tell that that egg you just ate caused problems. I asked my doctor how long on the diet before I knew I was on the right track. He told me 3 weeks which is when my next appointment is. However, a gal on one of my other groups told me she knows people that took 3 months before they noticed any improvement. This is why this gal advocates testing. I'm sure with your damaged villi it's celiac. With me, I'm awaiting the stool test from enterolabs. Might be a month or more till I have results. Allthough the wait is TERRIBLE, I will REJOICE if it comes back positive. I just want to get well. Good luck on your new diet. Hugs, Carol B P.S. With my IBS (if that's really what it is) when it's acting up it doesn't matter what I eat I'm in agony. When it's not acting up it doesn't matter what I eat. That's why I never linked it to food)
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#19 Guest_NitaB_*

 
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Posted 31 May 2004 - 08:45 PM

Carol,
So, no rejoicing about the egss yet, eh??? :D Of course, if I feel well after this evening, I will eat the rest of the potato salad! :) If not, it won't be hard to give up, at least temporarily! That ice cream that hurt bad, doesn't even look good in the freezer! Funny how that works! And I'm not even sure what has bothered me, but those things that I ate most recently, causing pain, don't appeal to me at all!

I too, have avoided whole corn and nuts for years, being told it was IBS. Will try them again someday! I don't really remember whether they cramped, or just went through me. Could've went through me, due to damaged intestines, regardless.

I hope you get your resutls back and can get on with some treatment! Good luck!
Nita
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#20 Chantalle

 
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Posted 31 May 2004 - 09:48 PM

Thank you NitaB and Kalo for all your help...this site sure helps me feel like I'm not crazy! IBS and it's symptoms have a tendency to make those who suffer feel as though they are hypochondriacs. That's sure how I felt (feel) when I have ever talked about it to my doctor(s). Which is why I have only mentioned it twice since I've been an adult on my own (my mom may have talked to doctors about it when I was young, I don't know).

I'm not too sure what I'll do. I could wait to see the specialist (in 14 mos.!), or e-mail Enterolabs and see if they will test samples from Canada.

One thing I have to note - which really became apparent to me just today - I've been must worse for the past 6 weeks than I've ever really been. I've always suffered but this time around it is so bad for SO LONG. It seems like this just leapt out of nowhere in a way. Other than the bowel disorders and gas, I could feel pretty much o.k. before. I get these really sick feelings now that last a long time, and the gas and diarrhea is worse than ever.

Is it possible that I have had IBS all along and lactose intolerance, but both have gotten worse? I guess the only way to really answer all this is to get that test done through Enterolabs. I'll check their site tomorrow.

Once again, thank you - and I'll be watching for those results of yours!

Chantalle
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#21 kalo

 
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Posted 01 June 2004 - 06:43 AM

Good morning gals. My health history goes back to birth and I'll be 55 in a few weeks. Chronic fatigue/fibromyalgia/low thyroid/low adrenal/sinus and allergies. Turns out that the constipation I had from birth severely up until 20 years ago when the IBS took over may have been from gluten intolerance. Also, the 3 week bout of the stomache flue comming out both ends 24/7 probably wasn't the flue. It doesn't last that long. I missed at least a month of school every year and lived on penicillan shots etc. If I remember correctly (don't count on it LOL) Enterolabs will test anywhere. I'm sure it's listed on their sight. Look them up. I've been real sick this past week. I'm hoping I feel well enough today to get some work done around here before DH comes home tonight. He works out of town. Hugs, Carol B
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#22 kalo

 
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Posted 01 June 2004 - 04:47 PM

My enterolab test came today. YEA! I already did the swab test for the genes. Will do the other in the morning and get it out the same day. Hugs, Carol B
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#23 Guest_NitaB_*

 
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Posted 01 June 2004 - 05:22 PM

Chantalle and Carol,
I think it helps here, just having someone who understands what you're going through! The support makes a whole lot of difference.

Chantalle, I still would be willing to try the dairy, egg, and gluten-free diet. If you would just feel better, it will be worth the effort! I don't feel quite as good today, something wasn't perfect that I ate, but I don't feel bad. Just some rumblies! I seem to be having trouble eating fruits, as I guess they're harder to digest. I hadn't been eating enough before, so will take time to digest more easily. Also, I think that milk protein is hard to digest, not just the milk sugar. So, you may need to give up milk anyway, for now. Mind you, I'm not sure if and how it's different! Do the test, if you can!

Carol,
Yaaaay, get that test in and get those results back! It is amazing how long you have suffered! It's odd though, that on my bill for the blood test, it says they did the gene thing. It indicates to me I don't have it in my genes, if it was negative. I just can't believe it! But, I also have the itchy sores on my elbows and knees sometimes, have for over 8 months. The GI DR. said I'd need to see a dermatologist to get results for those. You'd think he would've been a bit interested, as there could be a correlation. Now I need another flare-up to see yet another DR.! :)

So ladies, keep me posted!
Nita
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#24 ROYAL BLUE

 
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Posted 04 June 2004 - 09:10 AM

I just spoke to my sons GI doctor today and now feel sick to my stomach.

Last summer my son was tested for celiac, his Tissue Transglutaminase
was over 100. He has now been gluten-free for about six months.

We re- tested to see if his numbers had dropped, so I know if he truly is gluten-free.

Here is the kicker, his numbers now are over 200. How can this be? Could they
have screwed up the test? Even if he was getting Cross contamination from somewhere, would his numbers atleast have dropped a bit, not doubled?



Any help or opinions
would be greatly appreciated.

Thanks Tracy


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#25 Guest_NitaB_*

 
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Posted 04 June 2004 - 03:43 PM

Tracy,
I'm so sorry! I don't know the answer to your question, as I'm way too new to this. But, I feel bad for your dilemma. What did the Dr. say??? Are you supposed to keep him on a gluten-free diet?

Hugs to you and your son. I hope someone here has an answer for you, as I'd be interested to know, also.
Nita
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#26 gf4life

 
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Posted 04 June 2004 - 06:53 PM

Have you taken him off dairy too? Sometimes dairy can delay the healing process. If this is the case and he is still getting contaminated somehow, then it could explain the increase. What did the doctors say about it? I also wanted to say that not everyone is able to fully heal in six months time. Some people take much longer. How are his symptoms? Are they improving?

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#27 ROYAL BLUE

 
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Posted 05 June 2004 - 05:36 AM

It actually was the GI nurse that gave me the blood test results when I phoned. She said she would check with the Dr. and get him to call me. She also said I should also look at his symptom not just the numbers.

I have not taken him off dairy, I thought he was taking it fine ( how would I know otherwise)?

His bowel movements are normal almost always, his bloated abdomen I think has gotten smaller and he has been growing about 1/8-1/4 inch a month (but maybe this is normal for a 7 yr. old).

I am very careful about cross contamination. If their is a possibility of contamination, I do not buy him that brand of food. It is possible to get contamination from school or ( maybe his dad). But the occasional contamination or accident would that cause his numbers to be twice as high as before he was gluten free?

Tracy
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#28 gf4life

 
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Posted 05 June 2004 - 07:53 AM

Another one of the members here posted earlier this year about her bloodtest numbers being higher, but when they did the biopsy her intestine showed that she was healing. So you never know. Did they do a biopsy on you son? They could tell by repeating the biopsy and comparing the results. Otherwise the only way to tell is to watch the symptoms.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#29 Guest_NitaB_*

 
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Posted 05 June 2004 - 11:07 AM

On this subject of testing, I have another question. If I do the gluten-free diet for 3 to 6 months, and decide to be tested again to see about the lesions, can anything other than an endoscopy tell? I have friends asking if I couldn't have a catscan or MRI. I've never had either, and not sure what they can tell. I'm assuming the test needs to be more internal. Can anyone clarify this for me?

I won't do any more blood tests, as they came back negative in the first place! I should be glad to have had the biopsy first! I have to say, my gluten-free days, of which I'm trying to do, are the days I'm feeling good! I'm paying for my mistakes, however!

Thanks again everyone! This board has been so helpful. :)
Nita
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#30 gf4life

 
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Posted 05 June 2004 - 12:16 PM

Baruim x-rays can be done to show intestinal abnormalities, but they do NOT give a good enough view of the intestines to tell if the lesions have gone. Only the endoscopy can show that. There is the new camera pill that is supposed to be good, but without the tissue samples I'm not sure if they could tell if the damage is getting better.

An MRI or a CT scan would not work for this disease.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children




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