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

Probable Celiac - Need Help With Questions For Gi Guy On Fri.

GFPamela

Recommended Posts

GFPamela Newbie
GFPamela
Posted

Went gluten free 2 yrs ago without a diagnosis. Now I'm not willing to do a gluten challenge as symptoms are too severe (IBS, severe gas, etc). My sister was diagnosed in infancy. But the doctors then thought she'd outgrow it and so she suffered a lot of damage until she went back on a gluten free diet as a young adult. I see a GI guy in a few days. I'm wondering what questions to ask and what to expect. Really would like genetic testing since my most of my other 6 siblings are having problems but are in denial and few believe I could also have celiac disease. What are you all seeing out there? Do doctors sometimes agree to genetic testing in a case like mine? Paying out of pocket is not an option. Thanks for any help you can give.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted
Do doctors sometimes agree to genetic testing in a case like mine? Paying out of pocket is not an option. Thanks for any help you can give.

I'm sure the doctor could order the genetic testing, but you may want to contact your insurance carrier before hand, since some do not cover genetic testing. I would like to have the genetic testing done just to see what genes I do have, but my insurance won't pay for it. I don't want to foot the whole bill since I am already diagnosed by blood work and biopsy just for curiosity sake. I do think if I knew what genes I had I could potentially use it to help my brother and father to get tested( They both refuse and have symptoms). I have not had my two boys genetic tested either for the same reason. I have had them both screened, although it was not a complete pannel. One of mine I am a little suspicious and probably will undergo more blood work on him soon. I hope you get the answers you need.

ravenwoodglass Mentor
ravenwoodglass
Posted

This is a tough one, not trying to answer it but what I think he is going to say. I would expect he is going to want you to go back on gluten for testing. Whether your insurance company will want to pay for genetic testing is a good question. Insurance companies can be real tough to deal with. They may want to see a blood test and biopsy done first. It is possible that he will diagnose based on family history and the resolution of your problems once you went on the diet. It would be helpful if you can bring in copies of your medical history from before and after you started the diet.

I don't know what your copays are but in the long run it may amount to more than getting gene testing done on your own. Enterolab would be one place to check for independant genetic testing and they test for more than just the 2 genes that most doctors test for. Gene testing can't diagnose you, it can tell you what genes you have and is sometimes a valuable component in the diagnostic process but a lot of folks carry the genes without developing celiac.

Doctors do advise testing of all first degree relatives once one person in a family is diagnosed. That said you can not force them to test. You can find that info on the net on sites like the NIH's celiac awareness campaign and many other medical sites. Perhaps if you print out some info from that type of site your other family members might listen and get tested.

GFPamela Newbie
GFPamela
Posted
  • Author
This is a tough one, not trying to answer it but what I think he is going to say. I would expect he is going to want you to go back on gluten for testing. Whether your insurance company will want to pay for genetic testing is a good question. Insurance companies can be real tough to deal with. They may want to see a blood test and biopsy done first. It is possible that he will diagnose based on family history and the resolution of your problems once you went on the diet. It would be helpful if you can bring in copies of your medical history from before and after you started the diet.

I don't know what your copays are but in the long run it may amount to more than getting gene testing done on your own. Enterolab would be one place to check for independant genetic testing and they test for more than just the 2 genes that most doctors test for. Gene testing can't diagnose you, it can tell you what genes you have and is sometimes a valuable component in the diagnostic process but a lot of folks carry the genes without developing celiac.

Doctors do advise testing of all first degree relatives once one person in a family is diagnosed. That said you can not force them to test. You can find that info on the net on sites like the NIH's celiac awareness campaign and many other medical sites. Perhaps if you print out some info from that type of site your other family members might listen and get tested.

Yes, thanks. I'll see what he has to say tomorrow. My gene testing would be more helpful to my family than me because I'm already convinced. I'll have to keep working on them. I wish doctors would test right away rather than tell people (like me) to try a gluten-free diet and see if problems are resolved.

GFPamela Newbie
GFPamela
Posted
  • Author

I'm sure the doctor could order the genetic testing, but you may want to contact your insurance carrier before hand, since some do not cover genetic testing.

Thanks for the info. I'll call them today. I don't want to go in to the appointment blind.

BettyinMD Newbie
BettyinMD
Posted

Thats interesting that your sister was diagnosed as an infant! Same thing happened to me, and my mom was told I would 'grow out of it.'

Good luck tomorrow!

GFPamela Newbie
GFPamela
Posted
  • Author
Thats interesting that your sister was diagnosed as an infant! Same thing happened to me, and my mom was told I would 'grow out of it.'

Good luck tomorrow!

Yes, she ended up with ulcerative colitis, stunted growth, is sterile and now osterporosis and diabetes! But she deals with it all very well. Now I have to learn from her; she's very strict with her diet and I have to watch better for that hidden gluten.

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      128,103
    • Most Online (within 30 mins)
      7,748
    Judithann
    Newest Member
    Judithann
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • TerryinCO
      Status Update...

      By TerryinCO · Posted

      Thank you for the information. I did order/receive GliadinX to have on hand in the event of suspected exposure.
    • Dc91
      Celiac or not?

      By Dc91 · Posted

      Just had a letter through from the Celiac team, they’ve diagnosed me through my bloods, no endoscopy/biopsy needed. I guess I’ll be sticking around on this forum and I’m sure I’ll be back soon. thanks for all your help 
    • Ryangf
      Do I really need to get a biopsy?

      By Ryangf · Posted

      Hi everyone I’m somewhat new here- at least this is my first time posting.    I have been having persistent stomach issues since July of 2024- so around 7 ish months I’ve been having issues. At first I thought it was just a bout of constipation because I had had that issues before but- it simply did not go away at first I went to urgent care for my bloating and stomach pain and constipation and they basically didn’t really check anything and just passed it off as constipation and gave me stool softeners. Then I started having joint pain and a sharp stinging sensation in my back that debilated me and urgent care passed it off as muscle spasms. Then I finally went to my primary care doctor and they put me on a lowfodmap diet- and that didn’t help…(I was still eating gluten product),then I told her that didn’t help and then she didn’t contact me for several weeks not even trying to pinpoint the cause of my discomfort. So I started doing my own research from reputable sites- and analyzed my symptoms. Then suddenly I started losing weight rapidly 23 pounds in a month to be exact and I had like pale yellowish stool. Then I started realizing maybe it was gluten that was irritating me and I cut it out and started feeling a little bit better but still had some discomfort. Then I contacted my doctor again for a blood test for it and it came back negative. But I still was worried at least if it could be anything else going on in my stomach though I was sure it was celiac disease. Then after me practically begging her to let me get an endoscopy eventhough she insisted I was fine- I choose a doctor to see that was not my primary care doctor to evaluate me and they recommended I get an endoscopy…and I had an endoscopy a few weeks later. That came back negative for celiac with my biopsy too and no other damages from my ultra sound I got or anything. So I was naturally extremely confused. So I started to feel like maybe I was over exaggerating. But then I started researching on endoscopies- and found out for a confirmed positive blood test and endoscopy I had to be CURRENTLY eating gluten something neither of my doctors notified me about nor the GI specialists. So I realized my doctor probably would not order me another endoscopy…and also I just decided do I really need to go through the pain of eating gluten again for an endoscopy- when I could just stop eating it? So I weighed it and at the moment I decided- I would not get an endoscopy and just be gluten free- and for a little bit- I was fine- then my stomach started hurting again- a few times could’ve been from cross contamination but I also saw that a lot of the gluten free products I was eating contained corn and I tested it and stopped eating corn products for a few days and felt better. So I also did research on corn and found that some people with celiac disease can respond negatively to corn because it has a protein in it similar to gluten. So I cut that out completely and felt better for a long time. Except for ocassional corn cross contaminations I felt fine- until recently where I think I may have had corn products a few times consistently- and not noticed despite my stomach upset because I had been dealing with stomach issues so long I thought it was the norm. Now for the past few days possibly because of the consistent corn exposure for the past month I’ve been having an upset and bloated stomach eventhough I stopped eating the corn- because I think (though studies are not sure on corn damaging celiacs stomach lining) corn may have been damaging my stomach lining again during that time- and I may be developing some new intolerances or conditions. I want to go get that checked out but I don’t want to be gaslighted by doctors again- cause it makes me feel crazy. And I’m also debating on whether or not I want to go through the pain and stomach damage again for 2-6 weeks to really confirm if I have celiac disease- and I’ve been even more reluctant because now I am in classes again and I have to be in class consistently standing up a lot (culinary class) for multiple hours on end and I don’t think me being fatigued and sick and in pain is going to be good for me during that time. Should I get an endoscopy to confirm if I have celiac disease again this time actually eating gluten up to that point- or should I just first try to figure out what intolerances I may have developed or other conditions via a doctor- or wait for a while until my stomach lining has repaired sufficiently or at least enough before getting an endoscopy and a blood test again at a time when I am not busy a year or so from now while maintaining a gluten free corn free diet until my endoscopy is booked and then I will begin eating gluten and corn up until the endoscopy? (Sorry I know that was a lot.) 
    • trents
      Less than 10 parts per billion issues

      By trents · Posted

      I have no specific recommendations but I would suggest looking for products that are advertised as produced in a dedicated gluten-free facility. That should eliminate one possible route of cross contamination. It doesn't guarantee that none of the ingredients going into the product are totally gluten free but is should eliminate adding more CC to the mix via processing machinery.  One of the issues you may be experiencing is that testing has shown that a significant percentage of "Certified Gluten Free" products can test far in excess of 10ppm. There was an article appearing in this forum back last summer outlining the results of testing that showed this to be true. So, it may be somewhat of a pig in a poke when you buy this stuff, regardless of how it is billed. It may be safe for you if it actually fits within the stated requirements of it's billing.
    • Hauama
      Less than 10 parts per billion issues

      By Hauama · Posted

      I can still have a reaction from “certified gluten free” products I don’t like having to use the eat and see what my body does approach are there really any purely gluten free products or do I just have to make all of my own food? 
×
×
  • Create New...