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How Should I Approach The Celiac Test?

potchergirl

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potchergirl Newbie
potchergirl
Posted

Hi, I am new to this forum but have found it very helpful so far. I have an appt. with a Gastroenterologist next week and am uncertain about getting tested for celiac disease again. I was tested about 6 years ago when I was throwing up every day for no apparent reason. My doc did a blood test for "wheat allergy" and told me one test came back positive and one came back negative. They did an intestinal biopsy which was negative, so assumed I don't have an allergy. My throwing up thing (sorry if too graphic) eventually resolved itself with a decrease in stress. SO...

Now I am pregnant with my 3rd baby, started going gluten-free about 2 months ago (about the same time I got pregnant), but I know if the doctor wants to test me I am going to have to start eating "nornally" again for it to be accurate (according to what I've read on this site). Is this safe?

Also--do my previous symptoms sound consistent with celiac disease?

Sorry this is so long but if anyone has input I would really appreciate it.

Rachel

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Ursa Major Collaborator
Ursa Major
Posted

Hi Rachel, and welcome to our board. Well, being tested for wheat allergy and being tested for celiac disease is not the same. Many of us will not test positive for wheat allergy, because celiac disease is not an allergy.

If you have been eating gluten-free for two months, your tests likely would be coming back negative, even though you sound like it is quite possible you have celiac disease. Have you been feeling better being gluten-free? Why did you decide to go on the gluten-free diet?

If you really have celiac disease, it is definitely NOT safe to go back on gluten while pregnant. You would endanger your baby's life (and possibly your own as well). Untreated celiac disease (as in, not being on the gluten-free diet) has been shown to cause miscarriages. I know, I had eight miscarriages, as I only found out about having celiac disease last fall, at the age of 52. No doctor had ever been able to explain all the miscarriages and difficult pregnancies before.

So, if you really think you want an official diagnosis and want to do a gluten challenge, please wait until you've had the baby (and preferably, until you have weaned the baby).

Melzo Rookie
Melzo
Posted

I would imagine that when they did the biopsy, they would have seen that you had Celiac Disease. With Celiac Disease your villi would be obviously damaged. But that is only my opinion and doctors have surely missed these things before.

I agree with Ursula that you should maybe wait until after the baby is born to do the gluten challenge. I too am going to be re-tested but only after little Samantha is born. :lol:

See what your GI has to say. It will not be that bad to stay gluten free for several months for your baby's sake? Will it? I know how hard it is for us - but I just look at how much healthier my baby will be. Heck, even if you don't have Celiac Disease, the baby will be healthier by default. :lol:

Keep us informed as to what your GI says. It will be interesting.

CarlaB Enthusiast
CarlaB
Posted

If you really feel the need to be tested now, I got tested by Enterolab and had been gluten-free for three months prior. My numbers were still very high.

Pregnancy is hard enough without doing a gluten challenge! I definately would wait if you want to have conventional testing done.

Ursa Major Collaborator
Ursa Major
Posted

Melzo, biopsies miss damage all the time, for various reasons. One is, that many doctors don't take enough biopsies, and miss the spots where the damage is. If the damage isn't too bad (as the villi being completely flat), many doctors don't think it's celiac disease, even though they're wrong.

Carla has a point, I forgot about Enterolab. You wouldn't have to go back on gluten to do their test, and it would still be accurate after only two months gluten-free.

potchergirl Newbie
potchergirl
Posted
  • Author

Thanks for your responses. I will stay gluten-free if I feel like I really need to as I see my dr. and continue my research, but I really don't want to. Morning sickness is bad enough without being so restricted in my diet!! I know I will probably figure out more things that I can eat but right now it is hard. How do I get the enterolab test?

CarlaB Enthusiast
CarlaB
Posted

Ah, morning sickness ... the more I had it, the more I just ate bread, the more I just ate bread, the more fatigued I got!! It was a vicious circle, but I didn't know I was gluten-intolerant at the time. I'd stay gluten-free so that you feel the best you can possible feel!

Be sure you're hydrated, when I was pregnant, I added 1tsp. salt and 7 tsp. sugar to one quart of water like they do for severely dehydrated people and it helped tremendously.

Some people have morning sickness worse because of hypoglycemic type reactions. Don't rely too much on carbs, try to eat some protein each time you eat. Maybe get some gluten-free bread and have some toast with peanut butter that should feel good on your tummy!

www.enterolab.com for the test.

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Hair Detective Newbie
Hair Detective
Posted
Hi, I am new to this forum but have found it very helpful so far. I have an appt. with a Gastroenterologist next week and am uncertain about getting tested for celiac disease again. I was tested about 6 years ago when I was throwing up every day for no apparent reason. My doc did a blood test for "wheat allergy" and told me one test came back positive and one came back negative. They did an intestinal biopsy which was negative, so assumed I don't have an allergy. My throwing up thing (sorry if too graphic) eventually resolved itself with a decrease in stress. SO...

Now I am pregnant with my 3rd baby, started going gluten-free about 2 months ago (about the same time I got pregnant), but I know if the doctor wants to test me I am going to have to start eating "nornally" again for it to be accurate (according to what I've read on this site). Is this safe?

Also--do my previous symptoms sound consistent with celiac disease?

Sorry this is so long but if anyone has input I would really appreciate it.

Rachel

Hi, I am new to this forum but have found it very helpful so far. I have an appt. with a Gastroenterologist next week and am uncertain about getting tested for celiac disease again. I was tested about 6 years ago when I was throwing up every day for no apparent reason. My doc did a blood test for "wheat allergy" and told me one test came back positive and one came back negative. They did an intestinal biopsy which was negative, so assumed I don't have an allergy. My throwing up thing (sorry if too graphic) eventually resolved itself with a decrease in stress. SO...

Now I am pregnant with my 3rd baby, started going gluten-free about 2 months ago (about the same time I got pregnant), but I know if the doctor wants to test me I am going to have to start eating "nornally" again for it to be accurate (according to what I've read on this site). Is this safe?

Also--do my previous symptoms sound consistent with celiac disease?

Sorry this is so long but if anyone has input I would really appreciate it.

Rachel

I would agree with the suggestion to try the stool test...it does not require going back on a gluten diet.

The stool test showed gluten sensitivity and t-transglutaminase autoimmune response in my daughter who has alopecia. The problem from my perspective is that waiting to be diagnosed with celiac disease negates the opportunity to take action BEFORE there's villa damage. You can order the stool tests online and submit the tests to your insurance provider directly.

Open Original Shared Link

Interestly from the NIH web site...."Sometimes the disease (celiac) is triggered-or becomes active for the first time-after surgery, pregnancy, childbirth, viral infection, or severe emotional stress."

www.digestive.niddk.nih.gov/ddiseases/pubs/celiac/#2

Love to hear the result if you do the test. And from my Newsletter, Inside Out....

Testing for Gluten Sensitivity and Celiac

When it was discovered in the 1940s that gluten was the cause of celiac disease, the best diagnostic test was to remove gluten from the diet and see if you got better. Then in 1950 a biopsy to detect damage to the villi in the intestine was developed and became the “gold standard”. In the 1970s, 80s and 90’s, new blood tests were developed to detect antibodies in the blood (IgG, IgA, t-transglutaminase) allowing doctors to diagnose individuals with celiac without an invasive biopsy.

But the blood tests had a problem. A positive blood test indicated that you had celiac, but a negative test result didn’t necessarily mean you were okay. In fact, the two blood tests commonly used to make a diagnosis are only accurate 59% of the time and, in the early stage of celiac disease, before damage to the intestine occurs, the tests only detect celiac 31% of the time. In the late 1990s, Dr. Kenneth Fine developed a stool test. The test has a higher accuracy for detecting celiac and gluten sensitivity, in addition to showing that celiac is just the tip of the iceberg of gluten induced diseases.

potchergirl Newbie
potchergirl
Posted
  • Author

Just looking at your responses again and thought I'd answer some of the other questions:

The only reason I decided to go gluten-free is because my sister has learned a lot about celiac disease lately from her friend who has recently been diagnosed. According to her, because it can be so difficult to get a correct clinical diagnosis, if I have gotten a positive on ANY test for this, I should go gluten-free. At the same time, I have been reading a book called ultraprevention (by Mark Hyman and Mark Liponis) which suggests that IBS and thyroid problems (both of which I have/have had in the past) can be symptoms of or caused by celiac disease. I didn't really plan to go on the diet and get pregnant at the same time, though! I don't know which blood tests they did on me originally--I am thinking maybe I'd better start requesting my old Medical records and find out. Reading some of the info on this site, it sounds more like a false-positive blood test is possible, especially with a negative biopsy, but I am getting very confused!

Thanks for your advice

Rachel

Nancym Enthusiast
Nancym
Posted
Just looking at your responses again and thought I'd answer some of the other questions:

The only reason I decided to go gluten-free is because my sister has learned a lot about celiac disease lately from her friend who has recently been diagnosed. According to her, because it can be so difficult to get a correct clinical diagnosis, if I have gotten a positive on ANY test for this, I should go gluten-free. At the same time, I have been reading a book called ultraprevention (by Mark Hyman and Mark Liponis) which suggests that IBS and thyroid problems (both of which I have/have had in the past) can be symptoms of or caused by celiac disease. I didn't really plan to go on the diet and get pregnant at the same time, though! I don't know which blood tests they did on me originally--I am thinking maybe I'd better start requesting my old Medical records and find out. Reading some of the info on this site, it sounds more like a false-positive blood test is possible, especially with a negative biopsy, but I am getting very confused!

Thanks for your advice

Rachel

You're much more likely to have a false negative than a false positive. Enterolab would probably be the best bet for you, given that you've already gone gluten-free.

Go to a good health food store and look through their gluten-free products, there should be loads of stuff there, some of which you might like! Good luck! If it were me, I'd err on the side of caution and stay away from the wheat. You don't need it, your baby doesn't need it, and if you are gluten sensitive, staying away from it can only be a good thing.

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