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

A Few Questions About Testing


Gladys Rabbit

Recommended Posts

Gladys Rabbit Newbie

Hello, I am brand new here and this is my first post.

 

My story is probably very common.   I am in my sixties and the past year have had a lot of intestinal upsets and a pretty serious case of GERD.   When I was a child,  the home remedy for curing "the runs"  was to eat a lot of white bread and to cut back on fruit and veggies for the duration. I did this and  I got much worse.  Someone gave me a giant scone (since known as "The Scone of Doom") and that night I was quite sick. Between trips to the bathroom,  I did some Google searches on my symptoms and realized I had almost every symptom listed for Celiac,  even some of the odd-ball symptoms.    I quit gluten then and there and  my symptoms went away,  including the GERD.  What a terrific relief!

 

So I'm done with gluten and am adjusting very well to my new diet,  which I actually find myself enjoying.  But of course I don't know that I have Celiac,  I just have a very strong suspicion that I have it.   When I pass up bread and am asked why,  I, of course,  hesitate to say I have Celiac because at this point,  it's just a strong hunch.  So I say "gluten intolerance"  (which is certainly true enough) and I get eye rolls and "oh, every body has that nowadays,"  etc. etc.   Well that's ok,  I have a thick skin and can laugh along with them because before the Scone of Doom I felt the same way (forgive me.)

 

So should I get tested, do you think?  It means going back on gluten products again for six weeks,  I've heard?  I would rather put up with rolling eyes than endure that again.  And I just about faint dead away at the thought of an endoscopy (although I could tell 'em exactly where to take their sample,)

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Do you have any children? Celiac disease is genetic. So, your diagnosis would help others to get tested even if they are not displaying any intestinal issues (my symptom was anemia).

But if you choose to remain gluten free, you have to be very careful! Check out our Newbie 101 thread under "Coping" for tips that help uncover hidden gluten in processed foods, avoiding shampoos, lotions, lipsticks, etc and cleaning up your kitchen (no shared condiments, toaster, wooden spoons, plastics, etc.

Welcome to the forum!

Gladys Rabbit Newbie

Thank you, cycling lady.   I have already alerted family members to the potential problem.  I will check out the Newbie 101 page,  thanks.

 

Actually, this wasn't my first post after all, I just realized.

 

Thank you for the welcome.

nvsmom Community Regular

You may want to discuss a diagnosis of "possible celiac" or non-celiac gluten sensitivity (NCGS) with your doctor just in case you need food accommodations in the future, like for a hospital stay - hospital food is usually not safe for us.  

 

Food accommodations is probably the only reason where you could need a diagnosis.  Some people find a diagnosis helpful in motivating them to stay strictly gluten-free - those with NCGS might not be as careful eating out as one with celiac disease must be.  For example, they may eat fries that were cooked with oil that may have been contaminated, or not sent back the plate of food with the bread on it ( they might just take the bread off instead).

 

If you aren't testing, you'll need to be as strict as a celiac or you may not recover properly.  One exposure (crumb) will set a celiac back by weeks.

 

You may want to consider requesting the genetic tests.  Over 97% of celiacs have the DQ2 or the DQ8 genes.  If you do not have those genes, then it is much more likely that you have NCGS rather than celiac disease.

 

Best wishes in whatever you decide to do.   :)

Gladys Rabbit Newbie

Thank you for your reply,  NVSmom.

 

Food accommodations is probably the only reason where you could need a diagnosis.

 

 

This is the conclusion I have drawn as well.  I don't feel I have the "right" (so to speak) to say "I can't eat that,  I have celiac"  but I do think I can get away with "My doctor fears (for dramatic effect) that I have celiac."   My doctor will go along with this;  I know him.  He's one of those anti-grain people anyway.

 

I have a lot of mockers in my family.  They think I am onto a new fad.  I'd like to squelch that attitude, if possible.   For them,  "I have a gluten sensitivity"  won't cut the mustard.   

 

I am committed to a totally gluten-free life.  The before and after is just too dramatic to ever go back to gluten.  I am reading this site carefully so I can catch things I would not have noticed.

 

Thank you both for your replies.

 

-Gladys R,

sbell91 Newbie

First visit to the forum today, after discovering my son has tested positive for Celiac yesterday (waiting on referral for biopsy to confirm). My dilemma is similar - I started cutting back on gluten over two years ago and discovered my headaches were virtually eliminated and stomach cramping I had been getting every few weeks for over 20 years disappeared. I saw no reason to get tested for celiac, because I knew I'd have to go back on a full-gluten diet, and if reducing my exposure made me feel better then why bother? My son's positive diagnosis got me researching, and I've learned some new things - that even though my body seems to tolerate small amounts of gluten (a cookie here, the last couple bites of my kids hotdog there), if I do have celiac then I'm doing serious harm to body without realizing it. So, given the genetic component to celiac disease, I've decided to talk to my doctor about getting tested, because I want to know if I should be cutting gluten out entirely and getting really strict with my diet (the increased risk of cancer scares me!). So maybe this would be a reason for you to get tested and find out for sure as well?

nvsmom Community Regular

Ah, the mockers.... They usually shut up about it after they see you staying committed, and as your health improves.  Hang in there.  :)

 

Welcome to the board, sbell91.  :)


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



Celiac.com Sponsor (A8-M):



kiwinomad Newbie

"So should I get tested, do you think?  It means going back on gluten products again for six weeks,  I've heard?"

 

Hello all, can anyone comment on the above? I'm facing a similar decision and would like to know exactly how long I need to suffer to guarantee an accurate result?

cyclinglady Grand Master

Welcome, Kiwi!

Here is a link from the University of Chicago:

Open Original Shared Link

Some celiac experts require 1 to 2 slices of bread or the equivalent but most agree to a 12 week challenge for celiac blood test.

kiwinomad Newbie

Thank you Cycling Lady!! Very helpful albeit a little daunting!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748

    Leeila
    Newest Member
    Leeila
    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...