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

Advice On Tests And Where To Go From Here, Please

Kauaiidreamin

Recommended Posts

Kauaiidreamin Newbie
Kauaiidreamin
Posted

Hi everyone! Long time listener, first time caller and all that... :lol: Seriously, though, you all have already helped me so much! I have been lurking and reading a ton since I have started trying to figure out my health issues. I would really appreciate some help--any opinions or advice on whether I should continue with trying for a diagnosis, or anything would be awesome!

I will start with my main questions and then give a little background in case that is helpful.

1. Are the IGA and IGG antibodies good tests for ruling out celiac?

2. If I was gluten free for nearly three weeks, then back on gluten for a week before those two tests, are the test results even valid?

3. How many people here continue with a strict gluten-free diet without a celiac diagnosis?

I am in my thirties, and have had nausea after eating until my stomach is empty for at least 10 years. My "normal" BMs were diarrhea, which sometimes became intense for a day or so at a time (probably a couple of times a month). Body/joint aches, awful fatigue, lots of headaches and migraines, anxiety and depression.

I have Hashimoto's thyroiditis and I have been reading about the connections between that and celiac and/or gluten intolerance. When my thyroid tests kept coming back great while on treatment and the fatigue somewhat improved, but I still felt terrible, I decided to try gluten free to see if it helped.

About 3-5 days into the gluten free trial, it was like night and day...the aches were gone, I had energy, my anxious mind was still in the first time in YEARS. The nausea after eating was gone. The diarrhea was gone.

So I went to my doctor and asked to be screened for celiac, just in case, before I went gluten free forever. My test results were as follows:

IGA: <3 (reference range <11=negative)

IGG: 7 (reference range <11=negative, 11-17=equivocal, >17=positive)

Based on that, my doctor said I was not celiac but doing the gluten-free diet was not harmful so I could do what I wanted. ;) This was mid-Feb of this year, and I have been gluten free ever since.

I have had two episodes of the "flushing" diarrhea and nausea after eating since going gluten-free, both times after eating out (even choosing what I thought was a gluten free meal). Other than that, I feel pretty good. But the diet is hard, and I guess I am questioning my choice if I am not celiac...concerned that maybe I am missing another problem.

Anyway, sorry for writing a book. :unsure: Any advice?

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

Celiac.com Sponsor (A8-M):


WheatChef Apprentice
WheatChef
Posted

If your body responded positively to removing a possible toxin from it's system and then responds negatively to you reintroducing that same toxin then none of the blood tests that have or ever will be developed can give you a clearer answer. You mention contemplating going back on gluten for your next blood tests. If you go back on gluten and all of a sudden start feeling bad again, but bear with it till you get the tests, and then the tests all come back negative and your doctor tells you that you don't have a problem, would you really continue to eat gluten?

As for your third question, I do. My blood tests came back negative for celiacs yet a very long list of what I had thought were unrelated symptoms were already starting to clear up early on in my gluten-free diet and so my doctor said I should just continue doing the diet anyways although by the point when he said that (one month in) I didn't really care what he thought since I was finally seeing results.

Kauaiidreamin Newbie
Kauaiidreamin
Posted
  • Author

If your body responded positively to removing a possible toxin from it's system and then responds negatively to you reintroducing that same toxin then none of the blood tests that have or ever will be developed can give you a clearer answer. You mention contemplating going back on gluten for your next blood tests. If you go back on gluten and all of a sudden start feeling bad again, but bear with it till you get the tests, and then the tests all come back negative and your doctor tells you that you don't have a problem, would you really continue to eat gluten?

As for your third question, I do. My blood tests came back negative for celiacs yet a very long list of what I had thought were unrelated symptoms were already starting to clear up early on in my gluten-free diet and so my doctor said I should just continue doing the diet anyways although by the point when he said that (one month in) I didn't really care what he thought since I was finally seeing results.

Thank you for your perspective and sharing your experience...you're right, I wouldn't go back on gluten permanently even if more tests came back negative. The only celiac tests I had done were after three weeks gluten free, then one week back on and it was awful. I couldn't wait to get the blood drawn and quit eating gluten. I guess having a diagnosis would help me get through the times I get sick of paying so much attention to what I eat and want to give up, but maybe I just need to trust what my own body is telling me and not worry about what anyone else thinks.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,192
    • Most Online (within 30 mins)
      7,748
    MariaV
    Newest Member
    MariaV
    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
      Food Allergies

      By Ginger38 · Posted

      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
      Bread choice for a newbie

      By Kris2093u4 · Posted

      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
      7yo struggling!

      By JForman · Posted

      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
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      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
      Blood results

      By trents · Posted

      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...