Advice Needed For My Mum!

[filmguy50]

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!!

[GottaSki]

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.

[GFinDC]

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

[akate]

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.

[filmguy50]

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!