Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Yay, Inconclusive Test Results..
0

9 posts in this topic

*sigh*

 

So my bloodwork showed everything normal exept slightly positiv DGP IgG.

My biopsi was kind of negativ. I do have some inflamation in my small intestine, 'similar to that of celiac', but not enough for it to actually be celiac, it seems.

I have just about the whole list of symptoms for celiac, including perifiral neuropathy, and when I eat gluten I will throw up within 15 min. That was offcours making the gluten challange quite trying, but I feel confident some gluten made it all the way down to my intestine every day.

 

Obviously I can not have gluten, for whatever reason, and the european 'glutenfree' foods hold alot of wheatstartch, of about 20 ppm of gluten, this is enough to give me some symptoms. So I only eat naturally glutenfree foods and tht works well for me, but I just can not understand how docs can say I don't have celiac, when none of my tests are negativ and with the symptoms and high sensitivity that I have?

Also, at the same time, I'm thinking that as I am more sensitive than most, my tests should be 'more' positive if all this was caused by celiac? I have had some of the symptoms ever since childhood, so this is not a new thing ,but I have eaten very little gluten the last few years.

 

Is it posible that I have had non celiac gluten intolerance for many years, that is just recently starting to develope into celiac? Or are the two not conected?

 

Some of the reactions I have seem sort of like allergic reactions, like itches, puffy face and stuffy nose, so I am now beeing sendt to a allegy specialist to see if I might be allergic to wheat, but I don't feel like that fits all thet well.

 

Does anyone have any thoughts or information aboute cases like this?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hey, i'm afraid I don't have enough knowledge of this to answer your questions. I would like to ask you a question about your biopsy though. I've been told that they put a tube down your throat and thats what really scares me, is it as bad as it sounds? I think I have a gluten intolerance but am really scared of blood tests and needles, etc. Would you say its worth the blood test and biopsy to find out for sure? Ive been told it only shows up if you actually have celiac so i'm already cutting out gluten and wheat to see if i can self diagnose. I dont want to go through all the hassle of blood tests, etc for the doctors to say that they dont really know.

0

Share this post


Link to post
Share on other sites

*sigh*

 

So my bloodwork showed everything normal exept slightly positiv DGP IgG.

My biopsi was kind of negativ. I do have some inflamation in my small intestine, 'similar to that of celiac', but not enough for it to actually be celiac, it seems.

I have just about the whole list of symptoms for celiac, including perifiral neuropathy, and when I eat gluten I will throw up within 15 min. That was offcours making the gluten challange quite trying, but I feel confident some gluten made it all the way down to my intestine every day.

 

Obviously I can not have gluten, for whatever reason, and the european 'glutenfree' foods hold alot of wheatstartch, of about 20 ppm of gluten, this is enough to give me some symptoms. So I only eat naturally glutenfree foods and tht works well for me, but I just can not understand how docs can say I don't have celiac, when none of my tests are negativ and with the symptoms and high sensitivity that I have?

Also, at the same time, I'm thinking that as I am more sensitive than most, my tests should be 'more' positive if all this was caused by celiac? I have had some of the symptoms ever since childhood, so this is not a new thing ,but I have eaten very little gluten the last few years.

 

Is it posible that I have had non celiac gluten intolerance for many years, that is just recently starting to develope into celiac? Or are the two not conected?

 

Some of the reactions I have seem sort of like allergic reactions, like itches, puffy face and stuffy nose, so I am now beeing sendt to a allegy specialist to see if I might be allergic to wheat, but I don't feel like that fits all thet well.

 

Does anyone have any thoughts or information aboute cases like this?

Were you already eating gluten-free when you got tested?

0

Share this post


Link to post
Share on other sites

Mellon, it's really not that bad. I would not do it for fun, but it only last like 5 minutes. You get a sedative in the back of your throat, so it does not hurt.

If you think you might have celiac, you should talk to your doc about the testing. And keep in mind that if you go glutenfree now, it will be h**l going back on gluten to be able to be tested later on.

0

Share this post


Link to post
Share on other sites

Kareng, I was glutenfree light for years, but not totally glutenfree, and I did a glutenchallange for about 5-6 weeks prior to the biopsy.

0

Share this post


Link to post
Share on other sites




Thanks for the advice, I will go to the doctor tomorrow and see about a blood test as I've only been gluten free for one day.

0

Share this post


Link to post
Share on other sites

That is good to hear :) One day will not make much of a differens. If the bloodwork comes back clarely positive, you can consider if that is good enough for you to trust it, or if you want to do the biopsy to bee 100% sure

0

Share this post


Link to post
Share on other sites

My mum is trying to tell me not to get tested. she thinks I'm overreacting as I've had a lot of stress in my life recently. she said the doctors will just tell me that it's a stomach bug. I need to know how seriously doctors will take me? if I say I want the blood test will they give it to me? or will they be like my mum and tell me to consider other causes. She has said I should just stay off bread and dough products for now and see how it goes, so I'm going to do that since it's the weekend and I probably won't get a blood test til Monday anyway

0

Share this post


Link to post
Share on other sites

I don't know what your doc will sey, that depends. Some will have you tested 'just in case' for almost no reason, others will rather not test. But I realy would recomend you get tested before you go glutenfee. You can stay mostly off gluten for the weekend, but have half a cracker a day or so.

If you go of gluten and then back on, that i so much worse than just staying on the stuff...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,654
    • Total Posts
      921,619
  • Topics

  • Posts

    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
    • Thanks cyclinglady! I will!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined