Possible Celiac?

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meganec17
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 8/16/2016 4:04 PM (GMT -7)   
I have not been formally diagnosed with celiac disease, so I hope this is OK to post.

I've bee having some medical issues recently that I haven't been able to pin down yet. I'm a 20-year-old female in otherwise good health. In the past few months, I’ve had significant weight loss (I did not actively try to, but it’s definitely appreciated). I’ve also been suffering with fatigue and hair loss. My doctor assumed it was a thyroid problem, but my tests just came back as fairly normal. My appetite has been decreased and I do not have any temperature intolerances. I also occasionally get diarrhea and floating stool - it's not a regular thing and I have not noticed a trend in foods I consume. I was referred to an endocrinologist as a follow up, but I am doubtful anything will be different.

I'm not sure if it's significant, but both my parents have autoimmune diseases - Graves' disease (thyroid) and T1 diabetes.

Should I ask to be tested for Celiac? Is it possible without severe GI disturbances?

Thank you!

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8035
   Posted 8/16/2016 6:48 PM (GMT -7)   
hey meg -

i don't believe in lines when it comes to health issues - actually, i'm not good with rules or lines in most areas of my life wink

i prefer to call it gluten issue spectrum - allergy, sensitivity, intolerance, or somewhere in between - testing doesn't always give the answers you seek because it tries to follow a certain set of rules - i think the best and most effective way is an elimination protocol - not always easy, but imo, way more beneficial -

the only rule that i have is strict adherence - don't even bother if you can't do it 100% !

try giving up all grains and products with any amount of gluten for a week - if you see a difference, then you're on your way to getting better - if no change, then go another week - if after 2 weeks you still see no change whatsoever, then it's likely you have no problem - then it's on to another suspect -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)

FamilyGuy
Forum Moderator


Date Joined Jan 2004
Total Posts : 3385
   Posted 8/16/2016 6:56 PM (GMT -7)   
I would certainly get tested for Celiac before I try an elimination diet. If you don't have the antibodies or the genetic markers, try an elimination diet to see if anything lessens your symptoms.

Consult with your doctor before following advice on the internet. ;-)

Good luck and let us know of your progress.
Jon, Co-moderator for Crohn's Disease & Celiac Disease forums

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 151
   Posted 8/16/2016 10:08 PM (GMT -7)   
TD1 and autoimmune Thyroiditis is strongly linked with celiac disease (self or families). Believe it or not, you can have silent celiac disease. Ask your doctor to order a complete celiac panel. Here is more information from a reputable site: The University of Chicago.

http://www.cureceliacdisease.org/screening/

Do not go gluten free as testing for CD requires you to be on a gluten diet. Here is why you should not go GF on your own:

http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/

Do the research and talk to your doctor!

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 151
   Posted 8/16/2016 10:18 PM (GMT -7)   
Oh, by the way, my only symptom when I was diagnosed was anemia. No intestinal issues. I had already been diagnosed with Hashimoto's Thyroiditis 15 years earlier. Two months after my DX, I started fracturing my vertabrae doing nothing due to Osteoporosis resulting from Celiac disease.

And...it can take months to YEARS for a celiac to heal. Hard to adhere to a GF diet for that long when you do not have a formal diagnosis.

meganec17
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 8/17/2016 8:39 AM (GMT -7)   
Thank you everyone for the suggestions!

Right now, I'm kind of stuck in limbo. My PCP referred me to see and endocrinologist, but the endocrinologist cannot see me for two months. I'm not sure what to do in the meantime.. continue testing with my PCP or just wait it out?

cyclinglady - very interesting that your only symptom was anemia. Coincidentally, I have a fractured vertebrae as well, although I'm fairly certain it is unrelated. Thank you!

cyclinglady
Regular Member


Date Joined Aug 2015
Total Posts : 151
   Posted 8/17/2016 7:48 PM (GMT -7)   
Megan,

I assume your PCP ordered a complete thyroid panel which tests for antibodies against the thyroid since one of your parent's has Graves (my own mother has Graves, while I have Hashi's). How are your glucose numbers? If off, you should be tested for antibodies (e.g. GAD) for TD1. Your PCP should be able to do both, unless you have insurance/provider combo who requires you to see a specialist to order tests (this is how they save money, sad, but true). In any case, two months seems like a long wait. Call in and see if there are any cancellations.

The fracture? How did it happen? If you don't know, it could be osteoporosis which can be related to malnutrition (e.g. celiac disease or IBD). Fracturing without an injury is not common in a 20 year old.

Oh, celiac disease. Again, your PCP can at least do the basic screening (full panel is preferred, but again, some insurances/providers require a specialist to order the complete test. Ask for a CD screening: TTG IgA and an IgA deficiency test which just determines if the TTG works.

Finally, document! Get copies of all lab results. Email or put requests in writing. Doctors tend to brush off patients (or don't listen well), but they always must respond to the written word. Be nice.

Good luck!

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8035
   Posted 8/18/2016 7:36 AM (GMT -7)   
"http://theceliacmd.com/2015/06/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet-3/"

some valid reasons, some pretty lame -

not a big surprise that a doctor is recommending getting tested & treated by ........ a doctor !

everyone has to find their own way to wellness - imo, that journey doesn't always have to be lead by a medical professional -


" Hard to adhere to a GF diet for that long when you do not have a formal diagnosis." not hard at all imo, if GF changes your life for the better - no one NEEDS to have gluten in their diet -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with :-)

meganec17
Regular Member


Date Joined Feb 2015
Total Posts : 63
   Posted 8/18/2016 9:31 AM (GMT -7)   
cyclinglady: I did have a full thyroid panel done. Also, my glucose numbers have been fine in the past. I was not tested for diabetes then because I have no other symptoms - no excessive thirst or urination. I'm glad I wasn't the only one who thought it was a long wait, like I said, I'm often able to get appointments rapidly. But, this is life. I'm on the cancellation list, though I will be unable to take last minute appointments once my school starts. I was really hoping to make some progress before the semester starts. Regarding the fracture, it happened during a freak accident at track practice before I started experiencing these symptoms. I do not believe the two are related, merely a coincident. Thank you for everything and I hope you're doing well.

soynomore: Thank you, I'll check that out.
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