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

Ugh! Negative Celiac Panel Blood Test Result... What Next?


KimKF

Recommended Posts

KimKF Apprentice

So... Daughter has to stay on gluten? Her next blood test is for the two genes that carry the predisposition for Celiacs. She will have that done tomorrow. The only relief from the diarrhea and abdominal pain she has had the the past 3 weeks is 1 day after going gluten free for 24 hours (repeat, 1 seminormal stool 24 hours after trying 1 day of gluten free). They told her to go back on the gluten, due to effective testing needs. Diarrhea still. I thought it was odd for her to have one somewhat normal stool a day after our attempt at gluten free. So... Dr. calls today saying her Celiac Blood Panel test was negative. She is so despondent, as she was so hoping to have some answer, even though we know this is so typical.

How does she find relief of the diarrhea, abdominal pain and bloating through this testing process? Dr. told her to go buy some Maalox and stop the pasta and bagels (high carbs) and stick to toast (any other suggestions?)! After her blood tested for the two genes tomorrow, the next step is the endoscopy (if necessary). Does anyone suggest I order any test from Enterolab? Or, are all those the same thing?

I want to tell her to just go Gluten Free right now! At least for the time being, what can it hurt. It can't effect a blood test for an inherent gene. And, if she feels some relief in the next couple of days, doesn't that suggest something?

She is at her wits end! Goes nowhere, sees noone! The toilet is her best friend!

Important to note here... she has Hashimoto's Thyroiditis which has been strongly linked with Celiacs (we found that out on our own), as well as her looooooooooong history of Gastroenteritis, Appendicitis, IBS diagnosis when nothing else could be determined. She has dealt with ADD, depression, hair loss, bloating, etc!

I say, gluten free now. Someone convince me otherwise.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

It is possible to have a positive endoscopy with negative blood work. She does need to stay on gluten for the endoscopy if she is going to have one. The genetic test, of course, is unaffected by whether or not she is eating gluten.

Skylark Collaborator

I hope your doctor is working with you to get an endoscopy scheduled really fast.

You could order Enterolab and it will probably come back positive. It's extremely sensitive, but not the same as a celiac diagnosis. The E-lab genetic test is the same as your doctor will do, so no sense getting that part. All you would really need to order is the stool anti-gliadin IgA. E-lab won't help her as far as doctors notes for school and whatnot. Also if she's positive at E-lab it mostly means she needs to try the diet, which you're planing on anyway.

I don't know about relief during a gluten challenge. As an adult, I had no need for a formal diagnosis so I never did one.

ravenwoodglass Mentor

If I was going to do a genetic test I would pick Enterolab over most of the ones the doctors order. Typically doctors only test for the 2 most common celiac associated genes. The results in my family of having the test for just those 2 genes was disastorous and resulted in one of my children going back on gluten and blaming all symptoms now on stress. Enterolab tests for all the known ones associated with intolerance or celiac.

Skylark Collaborator

If I was going to do a genetic test I would pick Enterolab over most of the ones the doctors order. Typically doctors only test for the 2 most common celiac associated genes. The results in my family of having the test for just those 2 genes was disastorous and resulted in one of my children going back on gluten and blaming all symptoms now on stress. Enterolab tests for all the known ones associated with intolerance or celiac.

Except that they label everything but DQ4 "associated with gluten intolerance". :lol:

Agreed it is a more thorough test, as they're identifying all the different beta chains.

missceliac2010 Apprentice

Forget the tests...go gluten-free now before she has a nervous breakdown! Unless she needs them for school, etc....of course that's your call.

That's my honest opinion!

Good luck,

Marz Enthusiast

Tough call :( When is the endoscopy scheduled for? Hopefully your doctor can schedule it soonish so that she can go on the diet asap.

I'm not sure how quickly the small intestine heals - perhaps if it's in a weeks time she can start going gluten free a few days beforehand? The villi aren't going to heal overnight...?

Even being "gluten-light" might affect the results... But you can try avoiding pure wheat, and just have wheat starch in her diet to keep the inflammation up... for what it's worth...

** Edited to say - it may be that intolerances to other foods are causing the worst symptoms at the moment, though gluten is probably the cause of these food intolerances in the first place.

I know that for myself, chicken, egg, turkey (for example), causes violent reactions in my intestine, sometimes only 2 days after I've eaten it. And they are 100x worse than just gluten by itself.

If the endoscopy is only a few weeks time, she might want to try an elimination diet to see if she's reacting very badly to certain foods. Of course if it's gluten itself causing the violent reactions, she won't get relief :( And wheat is usually eliminated first, so again... affecting the test results...

Look up leaky gut syndrome regarding food intolerance and the link with gluten.


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



Celiac.com Sponsor (A8-M):



SJD Rookie

Hi,

I'm new here, but I recently (3 months ago) put my 7 yr old daughter through NUMEROUS testing, including an endoscopy and a colonoscopy only to get ALL negative results. The day after the procedures I took her off gluten and within 48 hours she was perfectly fine! I have struggled with this her whole life and still to this day I have NO doctor that will tell me she has celiac. It is still a constant struggle figuring out all the hidden gluten, because she'll be doing great and then all of a sudden her symptoms are back. I'm getting to be a very good detective. I now believe that I and possibly my other two children have it as well.

I would URGE you to stop doing the testing and just go gluten free. It's NOT worth the pain.

I will pray that whatever you do will work fast. :)

nora-n Rookie

Here in Europe we recommend to stay on gluten til the endoscopy and testing is done.

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...