Are These Celiac Symptoms Or Am I Just Fine?

[unknown]

Hello everyone,

I had a celiac panel done and it was positive, but borderline positive so the doctor said that we'd wait 6 months and re-test.

I do not have the typical symptoms. I have been experiencing the following symptoms for years now:

- Constipation all the time with the rare instance of the runs.

- Experiencing a burning pain in my stomach. I have woke up at night with extreme pain in my upper stomach area and vomiting.

- My hair has become brittle, dry and has started to fall out.

- My teeth have become horrible. I have had more cavaties in the last 2 years than my entire life before and they have changed color and become see through on the tips (my dentist keeps asking me if I'm bulemic). And there are white spots now.

- I found out that I had very low vitamin d levels in a routine blood test (9) and have been on prescription vit. D for 4 months 50,000 units 2 times a week.

- My stool is always covered with a thick yellow sticky substance (I actually took a picture for my doc at my next visit).

- I feel nauseated a lot.

- I have gained weight (which I know is not a symptom).

My doctor has diagnosed me with PCOS due to the hair falling out, weight gain and labs showing that I am not ovulating; however I have been on medication for PCOS for over 2 years now with no changes and never a positive ovarian scan. I am wondering if I have been misdiagnosed and that my lack of ovulation, hair falling out, etc. may be due to celiac? I have no idea why I cannot lose weight and gain so easily...maybe my metabolism is gone. When I was younger, I was thin and I even used to lose weight without trying and then it just completly switched. Has anyone with celiac gained instead of lost weight?

I know, a lot of info...but I don't know anyone with celiac to ask and the more I research, the more I think that there may be a possibility.

Thank you!

[txplowgirl]

Hi there Unknown, welcome to the forums. Yes all those symptoms correlate to Celiac disease. A slighly positive is like being a little bit pregnant. I was always overweight, never could lose it. After going gluten free i've lost close to 50 lbs.

Take a deep breath and read read read. You'll be feeling better in a few weeks time.

Good luck.

Txplowgirl

[eatmeat4good]

Hi and Welcome! And YES all of your symptoms are Celiac related...gaining weight IS a common symptom....they just don't know or believe it yet, but there are a lot of people here who had it.

I wonder about your Thyroid. Thinning hair....weight gain...Hashimoto's is closely related to Celiac also.

Inability to lose weight...several of your symptoms seem thyroid too. Have a full thyroid panel and check for more than just TSH which can be normal even if you have Hashimotos.

My weight went up up up all the years I was sick with Celiac...and I was eating less, and less.

I'm 5 ft tall and got up to almost 200 lbs....it melted off in 6 months on once I realized it was Celiac and elimintated gluten.

DO not wait 6 months. You have a postive test...it's time to start the diet and start checking for vitamin deficiencies and secondary auto-immune diseases that can be associated with long term undiagnosed Celiac disease.

So glad you are here! Read, read, read and you will see how common your symptoms are and how many people had them resolve completely on the gluten free diet. Not saying it cures everything, but certainly with a positive blood test, you would be doing your body a huge favor to go gluten free immediately. Hope you feel better really fast!

[unknown]

Hi there Unknown, welcome to the forums. Yes all those symptoms correlate to Celiac disease. A slighly positive is like being a little bit pregnant. I was always overweight, never could lose it. After going gluten free i've lost close to 50 lbs.

Take a deep breath and read read read. You'll be feeling better in a few weeks time.

Good luck.

Txplowgirl

Thanks txplowgirl! Since I posted this, I've been reading through other posts and it seems like gaining weight is somewhat common, too. My doctor thinks that since I gain and am constipated rather than always needing to go, that it's basically enough to rule celiac out and is not too worried about it. "A slighly positive is like being a little bit pregnant. " So true! I didn't think of it that way!

I've also been reading the related conditions section of the forum and have noticed that maybe some of the other symptoms I've had that have no diagnosis may be related, too.

I had two "episodes of a reaction to stimuli" (what the neurologist called it because he had no idea what was going on and told me to keep allergy medicine in my purse). I had numb/pins and needles slowly going up my left arm and to my face that lasted about 10 minutes. I had an MRI and it came out totally normal and hasn't happened since. Although I do get off and on numbness, but not to the degree of the "episodes". I had no idea that celiac could cause the numbness feeling.

I also have a rash like/red spots on my sides that my doctor told me not to worry about (since there's no itching), so I just ignore it, but it looks just like the photos that were posted.

My doctor told me to continue eating normally and not to try going gluten-free until after the next blood test. Honestly, I don't want to live gluten-free for the rest of my life. Going gluten-free and being a vegetarian would be really hard. I love bread and gluten is practically in EVERYTHING. I think it's gonna suck if I do for sure have celiac disease, but I guess it's better to find out and get rid all these symptoms and constantly feeling like crap. But, just like everyone else, I don't have a choice...

Maybe I need a new doctor.

[Jestgar]

Hello everyone,

I had a celiac panel done and it was positive, but borderline positive so the doctor said that we'd wait 6 months and re-test.

I see this as the equivalent of your doctor saying "I want to wait until you are really really sick before I decide to suggest you do something to make yourself feel better."

If you don't think you could stick to the diet without a doctor's note, then yes, keep eating gluten, and keep getting tested until you get a positive result. If you think the diet is worth trying, you could stop eating gluten for a couple months, see how you feel, and then go back to eating gluten for three months before your next blood test.

[unknown]

Hi and Welcome! And YES all of your symptoms are Celiac related...gaining weight IS a common symptom....they just don't know or believe it yet, but there are a lot of people here who had it.

I wonder about your Thyroid. Thinning hair....weight gain...Hashimoto's is closely related to Celiac also.

Inability to lose weight...several of your symptoms seem thyroid too. Have a full thyroid panel and check for more than just TSH which can be normal even if you have Hashimotos.

My weight went up up up all the years I was sick with Celiac...and I was eating less, and less.

I'm 5 ft tall and got up to almost 200 lbs....it melted off in 6 months on once I realized it was Celiac and elimintated gluten.

DO not wait 6 months. You have a postive test...it's time to start the diet and start checking for vitamin deficiencies and secondary auto-immune diseases that can be associated with long term undiagnosed Celiac disease.

So glad you are here! Read, read, read and you will see how common your symptoms are and how many people had them resolve completely on the gluten free diet. Not saying it cures everything, but certainly with a positive blood test, you would be doing your body a huge favor to go gluten free immediately. Hope you feel better really fast!

Hey eatmeat4good, thanks for your reply!

I had some thyroid tests with my last blood tests, along with a thyroid scan because she (doc) said it was slightly enlarged. Both came out completely normal.

After reading the replies I've received so far, I think I will just go in on Monday and get my next labs done. She gave me the lab slip and just told me to go in 6 months, but if the results are the same, maybe I should just ask to go see a specialist.

[unknown]

I see this as the equivalent of your doctor saying "I want to wait until you are really really sick before I decide to suggest you do something to make yourself feel better."

If you don't think you could stick to the diet without a doctor's note, then yes, keep eating gluten, and keep getting tested until you get a positive result. If you think the diet is worth trying, you could stop eating gluten for a couple months, see how you feel, and then go back to eating gluten for three months before your next blood test.

You're right. I guess it's just easier to ignore it, rather than completely changing my lifestyle. I don't want to have this, but I also don't want to continue living with these symptoms either. They're pretty much ruining my life. I'm 28 and I feel like I'm super old and tired (plus I just found gray hair, so now I see the super old feeling in the mirror).

Plus the doctor I go to is with a hospital here in the bay area that has a very good reputation (not for celiac disease, but just as being good. I know that doesn't mean that she's necessarily good, though). She told me that if she forwarded me to a specialist that they wouldn't want to even see me with that low of a score and that they wouldn't do an upper endoscope without higher test results.

[mushroom]

Well, it is probably true that an endoscopy would come out negative at this point because you have caught it early, and are not sufficiently damaged to test positive. Like you know you are pregnant, but are not "showing" yet so the rest of the world doesn't know it. So you are caught in the situation of having to do yourself sufficient damage to get a diagnosis, even though you actually really have a pretty good idea of what is happening. Only you can make the decision of what you should do at this point. If it were me I would just avoid gluten, but I am not you. I tried ignoring the whole issue (well, after years of complaining and being told I needed to see a psychiatrist , I had IBS, fibromyalgia, I ignored it), until it came back and bit me very hard when i was 60.