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I Think I Possibly Have Celiac Disease - Help!

sillyker0nian

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sillyker0nian Rookie
sillyker0nian
Posted

Hello! I just found this amazing site so I'm really requesting some help, please :))

 

Well - where to begin? I guess the beginning.....

 

When I was a kid, probably about 6-8, I had terrible constipation - to the point I was in tears sometimes - as well as a bit of an irritability problem. I also possibly had 'pica' (eating dirt and chewing paper mostly however never diagnosed) but my parents probably chalked that up to - "Oh, kids will be kids" or something like that plus being super busy. Also, I've always been short (4'11"-5'0" right now still) and baby-faced since I can remember. The family doctor also said that I was losing too much protein at one time, but, we never got that looked at or cleared up thanks to my stubbornness as a child. 

 

Fast forward to high school, I developed a weight problem rapidly - watching my waistline go up in pant sizes. When I was a kid, I was "skinny as a toothpick" so I didn't understand why it was happening but I was very stressed with school and family life so I thought it was that. It was embarrassing, and, I started to notice I was developing gas problems to go along with that weight gain I didn't quite understand. I was also starting to notice joint issues as they ached, got hot, or I would have my bones "pop" or crack but be painless. 

 

Now, to just about two years ago - my health has been decreasing possibly faster than I have ever known. I was about 160-170 (on the upper end) lbs and feeling grotesque but I wanted to do something about it so I cut out soda and started to walk more. Now, I haven't been keeping up on exercise or dieting as much as I would like but I still take walks and today I weighed myself and it said ~134 lbs. I'm 22, and started this at about 20, so within about 1.5-2 years I have dropped close to 35 lbs or more all without too much effort. I'll talk about my other symptoms below.

 

This year, I got myself health insurance and started to try to get answers for my amenorrhea. My doctor started with a pap as well as some hormone serology testing. I ended up with low hormones as well as something interesting - elevated Transaminase levels. So, my doctor ordered me an ultrasound of my abdomen as well as Hepatitis C testing. After that testing came back negative and fine, she told me I might have a pituitary adenoma. She ordered me a CT scan which also came back negative and told me she doesn't know what might be wrong and referred me to an endocrinologist. 

 

I didn't know what else to do, and busy with full-time work, so I felt defeated and still feeling terrible. One night about a month ago, I ran across celiac disease through researching and saw all of the symptoms and had an epiphany that "Oh my - this could be what's happening to me!" . 

 

What I feel I'm having as well is:

 

  • Recurring abdominal bloating and pain
  • Chronic or recurrent diarrhea
  • Constipation
  • Nausea
  • Weight loss
  • Pale, foul-smelling stool
  • Fatigue
  • Failure to thrive or short stature
  • Tingling numbness in the legs, feet and hands
  • Pale sores inside the mouth
  • Abnormal dentition (tooth discoloration, loss of enamel)
  • Psychiatric disorders (anxiety or depression)
  • Acid reflux

I also have sometimes very painful heart palpitations and recently the right lower side of my abdomen has been hurting. One point, it felt like someone stabbed the area with a knife and I double-over in pain on my bed. I don't want to list more unless someone asks. 

 

My primary doctor is out on vacation or something till the end of this month and I'm just not feeling good at all plus feeling like I have the flu right now. I have an appointment with a different doctor tomorrow afternoon, too. 

 

What do you guys think? Should I talk to this doctor about celiac disease? What should I do? Should I request the full celiac serology testing? I'm getting to my wits end and I just want to feel better. If anything needs to be cleared up or asked, please let me know. Thank you!

 

P.S: Sorry, I didn't mean to make this an essay!! Also, I tried the gluten-free challenge for a few days after researching and felt so much better. 

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome. Do ask the doctor to run a full celiac panel on you when you have your appointment. Your symptoms do sound like they could be gluten related. Don't go gluten free until all celiac related tests are finished. When those are done it is a good idea to do a strict gluten free trial no matter what the results.

sillyker0nian Rookie
sillyker0nian
Posted
  • Author

Welcome. Do ask the doctor to run a full celiac panel on you when you have your appointment. Your symptoms do sound like they could be gluten related. Don't go gluten free until all celiac related tests are finished. When those are done it is a good idea to do a strict gluten free trial no matter what the results.

 

Thank you! And, thank you for the advice. I will make sure to have the "panel" written down so I don't forget anything in case she (the doctor) needs to know :) 

nvsmom Community Regular
nvsmom
Posted

I agree. Those could definitely be symptoms of celiac disease.  You might as well get yourself tested. Bring that symptom list to the doctor so she sees it all.

 

As Ravenwoodglass said, get the panel done. Celia tests are not perfect and can miss up to approximately 25% of all celiacs. If you get multiple tests done, celiac disease is more likely to get caught.

 

This is the full panel:

tTG IgA and tTG IgG (tissue transglutaminase)

DGP IgA and DGP IgG  (deaminated gliadin peptides)

EMA IgA (endomysial antibodies) - similar to the tTG IgA but shows more advanced disease and is measured as a titre

total serum IgA - a control test to check if your IgA levels are low - 5% of celiacs are deficient in IgA and that causes false negatives in IgA based celiac tests (ie. tTG IgA, DGP IgA)

AGA IgA and AGA IgG (anti-gliadin antibodies) - an older and less reliable test

 

And then there is also the endoscopic biopsy.

 

Do not go gluten-free before testing is done as that can cause false negative.  1-2 slices of bread, or equivalent, is all you need to eat daily in the 2-3 months prior to testing.

 

Good luck and welcome to the board.  :)

sillyker0nian Rookie
sillyker0nian
Posted
  • Author

Through research, I have been thinking that it could be Celiac so I'm glad other people on the board feel that it could be, too :) 

 

I have a full symptom list printed out and ready! And, also, thank you nvsmom for the panel list - I don't think I have one or two of those. I'll make sure to write those down, too! Also, do you think it would be advantageous to get some vitamin testing included? Or, would that be kind of superfluous? 

 

Thank you! 

nvsmom Community Regular
nvsmom
Posted

Celiacs are often low in some nutrients, the most common are K, Mg, Fe, zinc, Ca, B12, D, Cu, ferritin, A, and folate.  I read that anemia has become one of the main symptoms of adult celiacs, and it can sometimes be traced back to these nutritional deficiencies.

 

Some have the theory that there are deficiencies because of the intestinal damage which makes absorption more difficult, but I think there's more to it than that.  Many with non-celiac gluten sensitivity (NCGS) also have these deficiencies but they have no intestinal damage (so their celiac disease tests are negative).  I think the inflammation (not bloating or swelling) caused by poor health (due to autoimmune disease or food intolerance) has a something to do with it too.

 

I rambled.  LOL  It's a good idea to get those vitamins and minerals tested if you have celiac disease (or NCGS). If low, super doses of some of those vitamins, or even shots, can be very helpful.

 

The other thing I tell new celics to remember is that diabetes and thyroiditis are also very common in celiacs and should be checked as well.

 

Best wishes.  :)

sillyker0nian Rookie
sillyker0nian
Posted
  • Author

Thank you!!!! I wrote down those vitamins/nutrients you mentioned for a later time and put it next to my computer at work to remember. 

 

The new doctor I went to this afternoon, which I'm making my "go to" now for most everything, was amazing! She was so sweet and tested me for H. Pylori before we even discussed Celiac (which - I knew it wasn't it because I was on antibiotics last month!). She listened to everything I had to say, knew that I had to be eating gluten for the tests to be accurate, and even let me show her the entire Celiac panel and offered to add them before she found out the healthcare system already has a full Celiac panel on file for lab testing orders. Also, she added it to her lab testing favorites in the computer, too. So basically, as soon as I get a chance, I'm heading to the hospital to get my testing done :) 

 

Hmmmmm - that concerns me greatly. I'm pretty sure that diabetes and thyroid problems run in my family as it is. I'll have to go get those checked out as well when I get a chance.....

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nvsmom Community Regular
nvsmom
Posted

:) I'm glad that your appointment went well. It makes life so much easier when your doctor is working with you rather than against you.

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