Does this sound like Celiac?

[Rosie18]

Hi guys,

So, bit of background info - I'm an 18 year old female and I've struggled with food for as long as I can remember, but have never had any official diagnosis from a doctor as they've always been unable to explain my symptoms, often putting them down to stress.

In 2017/18 I had some serious issues with GERD and acid reflux whenever I ate anything, to the point where I would double over in pain and feel extremely nauseous for hours after a meal. I lost a lot of weight and was borderline anorexic, according to my doctor. I was told I was stressed, diagnosed with anaemia and told to simply "eat more". I've come to live with it and have just accepted that it must be normal for me now. I have always had problems with my teeth. I was prescribed fluoride supplements as a young child because I've never had enough enamel coating on my teeth, and get light marks, despite taking really good care of my oral health. I have always suffered from eczema and dry skin, struggle with constipation, and have really irregular menstrual cycles.

I can't help but feel that something isn't right and always wonder if I could be feeling a lot better than I currently do. My mother has very similar issues to me and has also never had an actual answer from a doctor. Could this be celiac disease? I'm aware of how difficult it can be to get an official diagnosis, so I'm wondering if it's worth pushing for more tests or just simply cutting out gluten from our diets and seeing if things improve at all?

Any advice or similar stories would be a huge help, so that I don't feel as if I'm going insane!

Thank you!

 

[trents]

Welcome, Rosie18! Essentially all of the symptoms you list are common characteristics of celiac disease. Has any doctor actually tested you for celiac disease? The first tier of diagnosis is done by checking for specific antibodies produced by damage to the lining of the small bowel by the disease. This requires only a blood draw. Ask a doctor to do a "celiac antibody panel." The most important antibody test and the most specific for celiac disease is the TTG. If your doctor is not familiar with celiac disease, and many of them are not well acquainted with it, go to the appointment armed with this: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

If the tests are clearly positive, the doctor may stop there and recommend that you begin a gluten free diet. Not just a  lower gluten diet but eliminating even traces of gluten that can be found in foods as well as some meds and supplements, etc. Accomplishing this requires quite a bit of education on the part of the patient because most people have no idea how prevalent wheat, barely and rye are used in the processed food industry and how non gluten foods are contaminated by coming in contact incidentally with gluten containing foods in production, handling, storage and preparation. 

If the blood antibody tests are not strongly positive, the physician may want to order a scoping of the upper GI tract, which includes the small bowel and a biopsy of it. The biopsy looks for damage to the small bowel lining, specifically the "villi." Celia disease damages the villi. The villi are responsible for the absorbing of nutrients from the food we eat and when they are damaged that function is impaired. Poor nutrient absorption would explain a lot of your symptoms, especially with the menses, low body weight and low tooth enamel.

Now this is important: Do not attempt to eat gluten free until either or both of these tests are done or the testing will likely be invalid.

[GFinDC]

Hi Rosie,

I agree with Trents.  Yes, your symptoms sound very much like celiac disease!  Celiac disease is associated with several genes, so it can run in families.  it may help if you do an internet search for doctors and celiac and your area/city.  Some doctors are not familiar with celiac disease and don't know the proper testing process for it.  Often the testing for celiac is done by GI (gastroenterologist) doctor.  I suggest you ask for the full celiac panel as some people are deficient in IgA and don't show up on the standard screening test.

Since celiac is genetic and also associated with other AI (auto-immune) conditions, others in your mother's extended family may have AI conditions, like rhuematoid arthritis, Sogren's disease, Hashimoto's thyroiditis, Type 1 diabetes, celiac disease, etc.

 There are estimates that 40% of a celiacs first degree relatives will have celiac disease.

Edited February 4, 2021 by GFinDC

[Rosie18]

Thanks for the replies guys.

No, I've not had a celiac test or any kind of screening, as doctors are always very quick to blame any problems on stress. I will definitely be asking for one now, though.

Seems like I have a lot of bedtime reading to be doing now, as celiac disease is very new to me - I'd never heard of it until a few months ago!

Trents, what you've said about continuing to eat gluten makes complete sense, though I've heard that you should eat quite a lot before a blood test? Is it true that I should try to include it in every meal?

Thanks again!

 

[trents]

The equivalent of at least one slice of wheat bread daily.