Jump to content
  • 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

Could It Still Be Celiac


esmee

Recommended Posts

esmee Newbie

Hi everyone,

I have been reading here for some time, but never posted before.

So here goes, and I am sorry if this is a long post :(

Since 2001 I have thyroid troubles (hashimoto


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator
;) hi esmee--i cant say you are barking up the wrong tree and going gluten free cant hurt you--living without these grains will not cause you damage and it may be the answer you are looking for---you dont have to be full blown celiac to have gluten intolerances--i am not a doctor diagnosed celiac, although my sister is and that increases my odds so much more, also my dad and gluten-free gave me back my life--i will never go back :D deb
llj012564 Newbie

I agree with Deb , the diet wont hurt you but you have to be strict or you wont know if it is helping you. You may also want to do the genetic testing if you think that you have to know 100% . For me my blood test was positive and the diet made such a difference I didnt see a need for the other tests. Just an added note .... when I started the diet I went very basic only fresh to start then added things one at a time to see how I reacted to them. I had to do this because I knew I had trouble with dairy and thought maybe there would be other things that bothered me so I started slow with only fresh foods. I discovered I ate really unhealthy b4 <_< Its much better now B) Good luck

tarnalberry Community Regular

While the chances are lower with the negative blood tests, they're still not zero. And only taking two biopsies ... well... that test isn't going to tell you much other than you don't have a raging case of celiac that's destroyed your entire collection of intestinal villi. <_<

The symptoms certainly could be consistent with celiac, but I'm sure there are other things as well. You might consider trying to go gluten-free for two or three months and see if you feel better. If you're uncertain, you could do a gluten challenge (eat some shredded wheat, or some other simple wheat product, not bread (which has yeast and other potential issues)) and see if that causes symptoms again. Of course, it's a very personal decision. Good luck!

celiac3270 Collaborator

Whether or not it's celiac, it can't hurt to try the diet. Numerous here don't know for sure that they have celiac disease, but the diet cleared up their symptoms and that's enough. Try it for a couple of months and see what happens...if you get better with the diet, then regardless of whether its celiac disease or a wheat allergy or whatever, you've discovered what is causing these symptoms----well, what FOODS and INGREDIENTS are causing the symptoms, if not the specific allergy or intolerance

Carriefaith Enthusiast

Even if you don't have celiac disease you may be gluten intolerant or wheat intolerant. You can get a blood test that checks for wheat intolerance. I think the diet is worth a try. Also have you been checked for crohn's disease?

esmee Newbie

Hi,

Thanks for your replies!

After 5 days of being gluten-free I messed up again in a restaurant, and with Christmas coming up I have decided to give it a rest for now, but to give it a serious try in january. It would be so much easier if I had a positive test, now it is just guessing!

So, for now I am back on pasta and bread, but I will go gluten-free in january and see what happens.

Thanks,

Esmee


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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748

    lovinlifeafter60
    Newest Member
    lovinlifeafter60
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.