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

Advice Needed For My Mum!
0

5 posts in this topic

Hello All,

How's it going? I'm hoping you can help me. I'm posting here on behalf of my Mum!

She's had a lot of symptoms which point towards celiacs disease for a number of years, but thus far has failed to get a diagnosis from the doctors.

She suffers from the key symptoms; diarrhoea, sore mouth/ulcers, skin rashes; etc. These rapidly decrease when away from wheat products.

Two years or so ago she began having problems with the tongue -- it gets red, very sensitive, goes a darker colour -- was once bad to the point she could hardly breath!

At first; the doctors thought this was due to an allergy to ibroprofen-- but then, a couple of weeks later, after eating a bread roll; these symptoms came back again.

Somewhere during this process; she was diagnosed with H Pylori - which shares some symptoms with celiacs. She had treatment, a triple anti-biotic; which relieved some symptoms for a while, mostly to do with pain/bloating of the stomach.

I should also add she has gastritis, and gastric erosion -- she was told this was quite possibly caused by H Pylori.

She's had a few tests that have not found celiacs -- but it is in our family, first cousins, etc.

I guess I'm wondering, has anyone had similar experiences, and found diagnosis hard to get? Mum is pretty certain it's celiacs -- although of course, neither her nor me are doctors! And the tests have not helped.

Whatever it is, she is still suffering and it effects her life in quite a big way. She has also had the feeling recently, with her doctor, that he's not taking her seriously -- perhaps thinking nothing is wrong with her!

Any thoughts/advice on next steps, or if you've had similar experiences would be very helpful.. thank you!!

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome FilmGuy!

Yes, many of us have very similar stories to your Mum's. My symptoms were dismissed by many doctors for years as stress, hormones, overwork, motherhood, depression, etc. My symptoms worsened each decade until I could no longer dismiss them myself. It still took another year or more of heavy medical testing to suspect Celiac Disease.

Your mother is a few steps ahead of me which is good. She suspects Celiac and has had some improvement in symptoms when she avoids gluten/wheat.

Do you have copies of the celiac related blood tests she has had thus far? If not request written or electronic copies from her doctors and if you need help interpreting them, you may post them here...many of us can help interpret them.

Do you have written copies of any endoscopy reports? Even if they did not take celiac specific biopsies, some of the description used in these reports can help determine Celiac.

She has a couple options:

If it is her primary or GI doctors that is being dismissive of a possible gluten connection to symptoms, find another doctor. Take a complete list of symptoms before removing gluten along with any that improve when it is removed - also note any worsening degrees in those symptoms. Take pictures of any skin issues and mouth ulcers that you can see well enough in a photo -- I have found it very helpful to document these items - showing them to my docs helped me finally get diagnosed. Also take a list of a complete celiac blood panel and necessary nutrient blood tests so that you are sure they order the correct blood work.

Option two would be to remove ALL gluten for at least three months (six is better) and keep a log of symptom improvement.

Depending on how much gluten has been removed from her diet prior to blood tests, it may have effected the results and if she is not currently eating gluten any further testing may remain negative. If she chooses to pursue official diagnosis, she should resume eating gluten - two slices of glutenous bread is sufficient. There are differing opinions regarding the length of time necessary to consume gluten before testing but the major celiac centers list between six and twelve weeks.

Good luck - let your Mum know this is a fantastic place for her to come ask more questions if she'd like.

1

Share this post


Link to post
Share on other sites

Hi Filmguy,

If she is having trouble breathing after eating wheat it could be a an allergic reaction. That is very serious and can be life threatening. She should probably have allergy testing in a doctors office, and maybe carry an n EPI pen.

Celiac is not an allergic reaction but is an autoimmune disease. But people do sometimes have both cel\iac and wheat allergy. Time to be diagnosed with celiac in the USA is in the multiple years, averaging around 9 years. So, yes, many of us have had symptoms for years that were ignored by doctors or were misdiagnosed and treated for a different condition. There is also NCGI (non-celiac gluten intolerance) which has very similar symptoms but there are no tests for it.

This recent study found that non-celiac wheat sensitivity exists and is actually two separate conditions. But not much is known about it yet.

http://Non celiac wheat sensitivity article http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

0

Share this post


Link to post
Share on other sites

The only symptoms I had were weight loss, extremely low iron, bloating and a sore stomach every now and then. Well, my immune system was also very down.

If you suspect she has celiac, ask the doctor for a blood test. Thats all my doctor did.

0

Share this post


Link to post
Share on other sites

Hey all - thanks so much for your kind responses! Will have a read of these with my Mum and will get back to you all.. thanks again!

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
      104,144
    • Total Posts
      919,569
  • Topics

  • Posts

    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,176
    • Most Online
      1,763

    Newest Member
    Red Butt in hemet
    Joined