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Celiac Disease Without Gastrointestinal Symptoms

darthluke12694

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darthluke12694 Newbie
darthluke12694
Posted

Hello,

I am not sure if I am having Celiac Disease symptoms or not.

I am 18 years old. My mom currently has Celiac Disease. She was diagnosed with it as a child, then it went into remission for many years. She was diagnosed with it again around 45 years old, and has been living with it since. However, she is living symptom free because she is on a gluten free diet.

I'm afraid that I might have caught the disease. First of all, I have no gastrointestinal problems. I very rarely have diarrhea. I have no abdominal pain or anything.

However, I have two different types of rashes. The first and worst rash is on my neck. The first thing that comes to mind is Dermatitis Herpetiformis. The rash looks nothing like it though. It does not blister. It just gets red, and it starts to flake. It doesn't cover my whole neck. It is only about 4 to 6 small spots. The rash lasts for about a week, then goes away for about a week, then comes back and so on. The rash usually comes back in the same spot. Also, the rash does not itch at all.

The second rash is on the bottom of my arms. This rash is a little different. It is patchy all across the bottom of my arm. It is red, and barely raised where you can barely feel it. It also doesn't itch. This rash usually stays on my arm all the time. It might go away for a couple days max. Both of these rashes have been going on for a few months now.

I have no idea if these could be signs of Celiac Disease or not. I know that it is a very real possibility I have it or could get it because my mom has it. It is either Celiac Disease or I am or allergic to something else (although I have no idea what it would be). I should probably just go to the doctor but I keep on putting it off. Anyone think it could be Celiac or something else?

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mushroom Proficient
mushroom
Posted

Hi, darthluke, and welcome.

It is possible you could have early stage psoriasis. When mine first started I would get a red patch on my skin about the size of a penny, sometimes smaller. It would just sit there doing nothing, no itch, no tingling, no pain. And then it would scale over with a silvery scale which usually came off in a single flake (i.e., stayed intact) and the skin underneath would be fine. Until it happened again :ph34r: And again. I didn't know what it was then. This went on for years. It wasn't until after I developed the arthritis symptoms that the psoriasis got worse and I was given the psoriatic arthritis diagnosis. My dermatologist had offered to biopsy it for me to see what it was but since it never bothered me I declined her offer. I don't think it would have made any difference for me because I would have never connected psoriasis with gluten - heck, even my rheumatologist didn't. But psoriatic arthritis is an autoimmune disease which is a co-rider with celiac.

Do either of your rashes have pimple-like heads or are they just flat and red?

darthluke12694 Newbie
darthluke12694
Posted
  • Author

My rash is does not have any pimple like heads or anything. It is just flat and red. He only thing that you can actually feel is the skin flakig off.

Thanks for your reply! I will certainly look into this! Thanks!

mushroom Proficient
mushroom
Posted

My rash is does not have any pimple like heads or anything. It is just flat and red. He only thing that you can actually feel is the skin flakig off.

Thanks for your reply! I will certainly look into this! Thanks!

Yes, that sounds like the way mine was. Sorry :( Might be best to quit gluten now before the danged thang gets a hold of you like it did me. Gluten free hasn't helped much.:rolleyes:

darthluke12694 Newbie
darthluke12694
Posted
  • Author

Thank you! I will try and do a gluten free diet and if I do get better I will go to the doctor to get a blood test to confirm it! Thank you and good luck to you!

mushroom Proficient
mushroom
Posted

Thank you! I will try and do a gluten free diet and if I do get better I will go to the doctor to get a blood test to confirm it! Thank you and good luck to you!

No, no, this is the wrong way around. You can't go gluten free and then confirm with blood tests. Once you stop eating gluten the antibodies they test for in the blood go away and you will get a false negative result. On the other hand, no one is likely to give you a blood test for celiac if all you have is red patches on your skin :unsure: Too much of a stretch for most doctors' imaginations and you may not test positive anyway.:rolleyes: The best you could probably do at this point is 1. ask for a biopsy of one of the red patches to see if it is psoriasis; 2. have the genetic blood test for celiac to see if you carry one of the genes that predisposes you to celiac. You can order this online through Enterolab if you wish, though your insurance will not cover Enterolab. Your doctor could order it under your insurance and probably would since your mother is diagnosed.

If you stop eating gluten and the patches go away, you will have averted a lifetime of problems, but you will not get your official diagnosis. (I am not officially diagnosed (Never tested) because I stopped eating gluten to try to heal my psoriatic arthritis.)

darthluke12694 Newbie
darthluke12694
Posted
  • Author

Yeah I actually got to thinking about it and that I need to go to the doctor first so the blood test it normal. I'm not sure if he will give me a blood test or not. I will ask for one though and maybe he will give me one especially since my mom has Celiac Disease. If not, then I will ask for a biopsy to see if it psoriasis or get a genetic blood test.

I will just go to the doctor and see what he has to say and I will go from there. I'm going next Monday. Hopefully I will have one of the tests done. Or better yet, diagnose me with something other then Celiac! :D If the doctor doesn't do anything....then I will stop eating gluten and see if it goes away.

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kareng Grand Master
kareng
Posted

Print this off to show your doctor. These are the parts you will want to highlight.

Open Original Shared Link

Celiac disease is an inherited autoimmune disorder...

Prevalence of Celiac Disease in the United States

Mom-of-Two Contributor
Mom-of-Two
Posted

I found out I had celiac a few weeks back via hugely positive blood panel-- my only complaint was upper abdominal bloating/pressure, gas pressure and cramping off and on, nothing interfering with daily activities, and no diarrhea or any other bowel symptoms. It was intermittent to the point I would forget about it and then when I got a bad episode of it before Christmas, I saw my primary doc again and she checked bloodwork for liver, pancreas, ulcer, etc and did an ultrasound to check for stones, gallbladder, etc. then I believe the celiac panel was an afterthought, I had it done a separate day. I was floored when I had a follow up and found out I had celiac because I already knew a good deal about it and didn't think I fit the classic symptoms at all. My doc told me for about a year that it was IBS.

I saw the specialist last week and actually she said it is quite typical in her experience, going for years with off and on again vague symptoms, being told its IBS or this or that. My numbers are quite high and she expects a good deal of intestinal damage when I have the endoscopy.

My point is, not everyone fits, there are so so many signs of celiac and they can be quite vague- my biggest complaint has been irritability/anxiety, and I had no idea it was related to celiac but the GI expects it will go away when the gluten is removed.

darthluke12694 Newbie
darthluke12694
Posted
  • Author

I just wanted to give you an update. I did go to the doctor today about my rash. The doctor thinks it is eczema since I have no other symptoms, especially any stomach issues. He said that a blood test isn't necessary, and that even if it did come back positive, it's not necessarily Celiac. He didn't recomend for me to get a blood test, but I insisted on getting one and he didn't have a problem with it. I'm not sure when the results will come in, but I will let you know what they are.

eatmeat4good Enthusiast
eatmeat4good
Posted

Good for you insisting on the blood test. And I think your Dr. is absolutely wrong that if it comes back postiive it doesn't necessarily mean it is Celiac. Your mother has Celiac. He should have agreed to test you on that basis alone. Wow. They never cease to amaze me. Just to let you know....for years I developed several different looking rashes until the Big One hit. That was Dermatitis Herpetiformis. But now I know the others probably were too because none of them have come back since I have been gluten free. good luck to you. It is wonderful you are thinking about this so early in your life.

One other point. Iodine causes the antibodies to remain active in the skin and can keep the rash active.Just wanted you to know that in case you eliminate gluten and the rash doesn't go away. Some people need to follow a low iodine diet in order to get the rash to calm down. Thyca.com explains the low iodine diet. :)

darthluke12694 Newbie
darthluke12694
Posted
  • Author

Good for you insisting on the blood test. And I think your Dr. is absolutely wrong that if it comes back postiive it doesn't necessarily mean it is Celiac. Your mother has Celiac. He should have agreed to test you on that basis alone. Wow. They never cease to amaze me. Just to let you know....for years I developed several different looking rashes until the Big One hit. That was Dermatitis Herpetiformis. But now I know the others probably were too because none of them have come back since I have been gluten free. good luck to you. It is wonderful you are thinking about this so early in your life.

One other point. Iodine causes the antibodies to remain active in the skin and can keep the rash active.Just wanted you to know that in case you eliminate gluten and the rash doesn't go away. Some people need to follow a low iodine diet in order to get the rash to calm down. Thyca.com explains the low iodine diet. :)

I agree with you 100% about being tested for Celiac because my mom has it. I told him that I have a 1 in 22 chance I will get it from my mom. He said that only means about a 5% chance, which I thought it would be much greater.

I also asked him if it is Celiac, if I continue to eat wheat won't it can affect me later in life even worse. Like if I don't treat it, could I potentially get worse symptoms? He said that most likely no. That it would only get worse if I already had the bad symptoms like diarrhea. I kind of disagree with that, but then I'm not a doctor.

It absolutely amazes me that my mom got diagnosed with this at the age of 2 (which was 49 years ago). It was one of the first things they tested for. 49 years ago, and it still isn't too well known among doctors.

dani nero Community Regular
dani nero
Posted

It absolutely amazes me that my mom got diagnosed with this at the age of 2 (which was 49 years ago). It was one of the first things they tested for. 49 years ago, and it still isn't too well known among doctors.

The new generation of doctors are too busy watching MTV.

darthluke12694 Newbie
darthluke12694
Posted
  • Author

I haven't gotten my blood test results back, but when I went to the doctor, I didn't even have a rash (figures it goes away when I go to the doctor). But now the rash is back. The same rash is back as described above, but I also now have a different type of rash. In the shoulder area, I'm getting VERY small dots. The closest thing I could call them is pimples, but they are way too small to be pimples. They don't appear to be filled with any kind of flui, and I can't pop them (way too small to pop anyway). The dots are barely raised above the skin. The center of the dot is darker red. They are pretty spread out. It sounds like this could be a mild form of DH. I think I've actually had this kind of rash before, but it's been awhile and very mild and didn't think anything of it because it went away. I also ate a whole bunch of bread the past 2 or 3 days, so maybe this is a sign. I'm going to continue eating normally until I get my blood results back just in case they need to test me again.

So do you think this sounds like DH? Sounds like this keeps on getting worse and worse for me!

kareng Grand Master
kareng
Posted

I haven't gotten my blood test results back, but when I went to the doctor, I didn't even have a rash (figures it goes away when I go to the doctor). But now the rash is back. The same rash is back as described above, but I also now have a different type of rash. In the shoulder area, I'm getting VERY small dots. The closest thing I could call them is pimples, but they are way too small to be pimples. They don't appear to be filled with any kind of flui, and I can't pop them (way too small to pop anyway). The dots are barely raised above the skin. The center of the dot is darker red. They are pretty spread out. It sounds like this could be a mild form of DH. I think I've actually had this kind of rash before, but it's been awhile and very mild and didn't think anything of it because it went away. I also ate a whole bunch of bread the past 2 or 3 days, so maybe this is a sign. I'm going to continue eating normally until I get my blood results back just in case they need to test me again.

So do you think this sounds like DH? Sounds like this keeps on getting worse and worse for me!

Where are these dots? My son get red almost flat , tiny dots on his chest, back & stomach when he has a virus.

mushroom Proficient
mushroom
Posted

Here are some pictures of DH in varying degrees of intensity. If you scroll back there are a lot more. Compare yours to these pictures and see if anything matches.

Open Original Shared Link

darthluke12694 Newbie
darthluke12694
Posted
  • Author

Where are these dots? My son get red almost flat , tiny dots on his chest, back & stomach when he has a virus.

The dots are on my shoulders.

I looked at the pictures and mine aren't as bad as what are in the pictures. Maybe it is a virus. I don't know. I guess the only way to know is to go on a gluten free diet. Whether my test results are positive or not, I'll go on a gluten free diet and I will figure out if this rash is from gluten or not. Im getting tired of guessing and wondering.

chi1968 Rookie
chi1968
Posted

I just wanted to give you an update. I did go to the doctor today about my rash. The doctor thinks it is eczema since I have no other symptoms, especially any stomach issues. He said that a blood test isn't necessary, and that even if it did come back positive, it's not necessarily Celiac. He didn't recomend for me to get a blood test, but I insisted on getting one and he didn't have a problem with it. I'm not sure when the results will come in, but I will let you know what they are.

I'm SO glad that you insisted on getting the blood test. And, if it comes back positive, you MUST get an endoscopy, as much for your peace of mind than anything else.

Yes, the doc is right that a positive blood test doesn't mean you have it, but you won't know for sure until you have a biopsy of your small intestines.

Even though one of my sons was diagnosed with Celiac, my GI doctor didn't think I had it, even though my blood test was a low positive and especially after the endoscopy, which she said looked completely "normal." They won't know for sure until they look at the tissue under a microscope. So, don't let them tell you anything is "fine" until you get to the very end.

darthluke12694 Newbie
darthluke12694
Posted
  • Author

Well I called in today to get my blood results and everything they tested for was a negative. So that is good news. So it sounds like I don't have it, or at least I don't have it yet. The doctor gave me some prescrption cream for the small rash I had and after a couple days the rash is gone. So it looks like the doctor was right and all I have is eczema.

Since my mom has Celiac I will always know I have the risk of getting it as some point. I'll always be on the lookout for any signs of it. Thanks everyone for all of your help!

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