Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Should I Approach The Celiac Test?


potchergirl

Recommended Posts

potchergirl Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Hair Detective Newbie
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

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
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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,186
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...