I Think I May Have Celiac Disease...

[Tillygirl]

Hello community.

I've been dealing with these horrible symptoms for almost a year now. It started July 2011 when I was diagnosed with dehydration. After spending a day in the hospital, I started suffering from diarrhea every time I ate anything. The doctors tried four or five different antibiotics before it finally went away. I even had stool tests done to test for multiple diseases (what exactly, I'm not sure, it was through my college health system.) Everything showed up negative. By August, all symptoms disappeared. I'd say around January 2012, I started noticing new problems when I ate. When I ate certain meats (beef and pork mostly) I would immediately have to go to the bathroom. When I drank cow's milk, I'd get terrible cramps and almost always have to run to the bathroom. I get terrible stomach aches and cramps when I eat eggs. I have stopped eating eggs and have switched to soy milk. However, I am still affected when I eat meat (sometimes poultry, but rarely.) At first I thought I was lactose intolerant and maybe starting to become meat intolerant. Today though, I came across Celiac disease when researching IBS. I found a symptom to be very interesting to me. Tingling in the fingers. I'd say for about 8 or so months now, I'll experience random tingling in my fingers. This usually happens when I touch plastics (like a trash bag for instance.) I thought maybe I was starting to get an allergic reaction to plastics, but when I read this, I had an AHA! moment. I also am quite underweight. I'm a 21 year old Caucasian female. I'm 5 ft 5 in and have been going back and forth between 105 lbs and 120 lbs. (It usually depends on if I'm taking my medication or not. I currently take Vyvanse for attention-decifit disorder.) I have appetite loss when on the medication. From reading other posts on this site, I've come to learn that having a gaunt look to you can also be a sign of celiac. I'm an extremely pale person (my face looks translucent, you can see veins through my skin.) I also have very dark circles under my eyes. I always thought this was because of my mother having dark circles. I for the most part get plenty of sleep (7-9 hours on average) so it's not from being tired. Even though I get plenty of sleep, I always feel drowsy and my back and legs constantly ache. I've also noticed within the past year that I've become very sensitive to sound. I can't stand hearing loud music or children crying. (I work in a toy store, so this has become a problem.) I've also became lethargic, annoyed, and constantly feeling depressed or unmotivated. The only time I actually feel motivated to do much is when I'm on Vyvanse. If I wasn't taking that, It would be hard to even get me out of bed. (Which is hard enough.) I've also experienced almost my entire life feeling very cold when I shouldn't. I hate having wind blowing on me so I can't have the window down in a car. I have to wear jackets when it's 75 degrees outside because I feel chilly. I am constantly complaining about the temperature at my work when the thermostat is set on 71 degrees. I'll be shivering at times and people will think I'm insane. I feel like I am ALWAYS cold. I don't know if this in common in people with celiac, or maybe this is something I should look into for something else?

Family background: My mother has hypothyroidism, and takes medication to control seizures. My father has a heart condition that I was tested for as a baby (I can't think of the name of it right now- but I tested negative.) He's had multiple heart surgeries, has emphysema, and beat skin cancer. All four grandparents have had cancer, only living grandparent has way too many problems to count (and is only in her 60s.), but has had her stomach removed due to stomach cancer. She has dealt with digestive issues for a while now.

So with all this information, I'm hoping someone may be able to help me figure out of maybe I do have celiac disease. I know I should probably go see a doctor, but I have also heard that doctors are not always very sympathetic to people with celiac disease. I wonder if maybe it's just IBS? Any information will help me.

[mommida]

You definately need to be tested for Celiac. It should start with a the blood panel and then an endoscopy with biopsy.

I don't know if there are people on this forum who weren't mis-diagnosed with IBS, before being diagnosed with Celiac.

The testing is notorious for false negatives. If you test negative for any reason, still try the gluten free diet.

DO NOT START THE gluten-free DIET UNTIL TESTING IS COMPLETE!

Auto-immune thyroid disease is connected to Celiac. (Grave's and Hashimoto's thyroiditis)

The tingling in the hands is most likely a vitamin B12 defiency. Please have your vitamin and nutrient level checked. (Celiac causes malnourishment and it sounds like your medication is contributing to poor diet intake )

Feel better soon!

[MitziG]

I second the above. Keep eating gluten for now, if you stop, it will mess up the tests.

Get a FULL Celiac panel done. You will have to specify:

Total IGA

TTG IGA

TTG IGG

Deamidated Gluten Peptides

Endomysial Antibodies

Very few doctors know what to test for, what most call a "celiac panel" includes only the first 3, whereas the last two are newer and highly specific for celiac.

Get a complete thyroid panel- TSH, Total T3 and Total T4, Free T3 and Free T4 and TPO. Most will just test TSH and use outdated lab values.

Get a blood workup of Vitamins D, E, K, B6, B12, Folate, Iron and Serum Ferritin.

Be insistent on every one of these tests. Get copies of all labs sent to you. Do not accept a phone call that says "everything looks good" or Kyour tests are negative." Many tests are subject to interpretation, and many doctors do NOT know how they should really be interpreted.

[MitziG]

Oh, and after all that- plan on everything being just fine, at which point you will be depressed and frustrated and the doctor will say you have anxiety and should try an antidepressant.

Try a gluten free diet instead.

Most here are NOT dx Celiacs. But they found out the reason they felt like crap for years what not in their head, it was in their bread.

You can feel better too. I promise!

[Tillygirl]

Thank you for your replies! I am going to print out everything you guys said and make sure I get all the correct tests done! I'll call the doctor first thing in the morning.

Thank you again!

[gem75]

i 100% agree about getting your thyroid tested and all the testa above are spot on... like poster said a lot of dr's will jsut run tsh and tsh don't tell you shiat. For well over a year my incompetent dr was just testing my tsh and telling me i had no thyroid problems. By the time i went to a competent dr i was in the middle of thyroid hell. A lot of people who are hyp thyroid also have hasimoto's , and auto immune diseas, like other poster said, a lot of people who have hashi's are also gluten intolerant.

before getting my thyroid diagnose i was dx'ed bipolar, depressed and anxiety. Bipolar is is so over diagnosed when a person is really hypo thyoid.

I suffered a long period of time with diarrhea... and when i stopped eating gluten it went away.

it's possible you have celiac as well. You gotta get both tested. Good luck.

[squirmingitch]

And Tillygirl, be FIRM with the doc about the tests especially the celiac panel. Don't just tell the doc this & this & this needs to be done --- when the doc says, "Okay I have ordered the tests", then you MAKE the doc repeat back which specific, individual tests enumerating each one by name. Otherwise you can find yourself dragging out the testing when you find out the doc didn't listen & went his own way which didn't do ALL the tests. And then you have to go back & get the missing tests "filled in" which means you're eating gluten even longer than necessary. You are 21, docs are likely to act all superior b/c they see you as a kid not as an adult. You know? Heck, we can't win for losing. Either docs think we're too young to know what's going on or the docs think we're too old & senile to know what's going on!

Also I might mention that many celiacs DO have problems with dairy as well as soy. If your villi is damaged then dairy can be hard to digest & you may have to lay off it for a while & then add it back after you have some healing under your belt. Soy is a problem for many of us including myself.

[Tillygirl]

Thank you. I have made an appt for 9:30 Friday morning. I'm going to a gastroenterology and internal medicine specialist, one I've never been to. Hopefully he'll listen to me, but I'll be sure to be stern about what exactly it is I want to be tested for. I've written down everything you've all said, thank you everyone for being so helpful!