Another Newbie...

[Tabasco]

Hi Everyone!

I'm new to the board. I don't even have an appointment yet but after all that I've read I'm calling a GE tomorrow! It seems that I've had symptoms since I was 8 yrs old. Who knew they might be related?

Here's my history:

Rash on hands - started at 8 yrs old until early 20's. Rash would blister and itch like the dickens. Many diagnosis from eczema to contact dermatitis. Lots of steroid creams all of my life. Spread to feet eventually.

Panic Attacks - 8 yrs old. I would tell my parents I had a stomachache but I now realize that it was panic attacks. They resolved after a couple of years.

Migraines[b] - Teens

Tingling in my arms - Teens. Saw a chiropractor and was diagnosed with degenerative disc disease in my neck.

Chronic Constipation - from 18 until now. I'm 44. Weekend laxatives became a way of life for a while.

Abdominal pain and Bloating - early 20's. Sometimes so bad that I couldn't go anywhere or wear certain types of clothes. Seemed to get worse with menstrual cycle and sleep diprivation.

Fatigue- early 20's.

Flatulence & Intermittent Nausea[b] - mid-20's. Doc's thought it was my gallbladder or that I produced excessive gastric juices. Ultrasound and upper GI.

Rashes - mid 20's. Diagnosed with food allergies this time after back scratch test which showed more than half of the foods tested. Didn't know about GS or celiac disease then and didn't take it seriously.

Panic attacks again- early 30's. Got really bad for about 2 years. Started seeing a therapist who diagnosed me with chronic low level depression (dysthmia).

Rashes - This time across my chest and back. Was diagnosed as having photosensitivity or sun allergy. Also had rosacea rash across the bridge of my nose and on cheeks.This lead me to be tested for lupus which was negative.

Constipation, abdominal pain and bloating- mid-30's. This time I was diagnosed with IBS. Told to add fiber to my diet and prescribed Bentyl for spasms.

Pain, tingling, numbness in arms and legs - 40. Tested for MS, lupus, B12 deficiency and spinal stenosis. All negative. I've also had my thyroid checked and it's ok. (2 yrs ago.)

So that brings me here. I have intermittant constipation / diarrhea and always gassy. Sometimes oily stools. (Gross...sorry) Still having fatigue and lack of energy. Lots of headaches. In fact, headaches pretty much have never gone away since my teens. Not migraines but every couple of years the migraines come back. Recently have had a lot of insomnia. (I may be peri-menopausal though.) Also recently diagnosed with very low Vit D deficiency. I don't go out in the sun since i was told I have a sun allergy.

Don't know about anyone else but I have felt like a hypochondriac most of my adult life. it seems that I have more "symptoms" than anyone I know. I feel like the girl who cried wolf.

I found this site becasue I have trouble losing weight since I turned 40. I was looking for hints and read an article that said gluten causes bloating. So I started reading up on gluten sensitivity and Celiac Cisease and it hit me like a ton of bricks! Could I have had this since i was a kid? OMG!! Since I don't have any trouble gaining weight, I assume that celiac disease isn't my problem. I certainly don't look malnourished!

So...I will call a doc tomorrow and hopefully get in soon. I came off of gluten for 2 days and the rash got a lot better. I got back on after reading about getting tested and the rash came back with a vengeance!

I'll let y'all know!

Stef

[ravenwoodglass]

In addition to talking to your doctor about testing for celiac get to a derm and ask them specifically to look for DH, the skin form of celiac. They need to biopsy beside the rash not the rash itself. Here is a link to the NIH's article on DH. A diagnosis of DH is a diagnosis of celiac so if the test is positive you need no more testing after that, just the diet.

Open Original Shared Link

[ang1e0251]

Don't assume that because you put on weight that you cannot have celiac disease. Not true, I believe that the % is about 34% that are overweight not underweight. I'm overweight and I have it. Each person is different. Keep eating gluten if you plan to get tested or the tests will not be accurate.

[The Fluffy Assassin]

Rashes - mid 20's. Diagnosed with food allergies this time after back scratch test which showed more than half of the foods tested. Didn't know about GS or celiac disease then and didn't take it seriously.

...

Pain, tingling, numbness in arms and legs - 40. Tested for MS, lupus, B12 deficiency and spinal stenosis. All negative. I've also had my thyroid checked and it's ok. (2 yrs ago.)

Hi Stef, and welcome,

I think your answers may be in the excerpts above. Sorry, my reading skills are off, but did you not take gluten sensitivity or celiac disease seriously or did you not take food allergies seriously? Have you been eating the foods that an allergy test 20 years ago showed you to be allergic to? Rashes are certainly associated with celiac disease, but even more commonly with allergies. Sorry for what are probably dumb questions, but if indeed you weren't taking the food allergies seriously, you might want to start.

B12 deficiency is very common in celiacs. If your B12 is ok, it would be comparatively unlikely that you have celiac disease. Granted, everybody's symptoms are different, but it would be unusual. That doesn't mean you couldn't have wheat allergy. Was that one of the allergies you tested for? (Celiac disease is an autoimmune disorder, not an allergy.)

Welcome to the board, and I hope you find your answer soon.

[Tabasco]

Hi Stef, and welcome,

I think your answers may be in the excerpts above. Sorry, my reading skills are off, but did you not take gluten sensitivity or celiac disease seriously or did you not take food allergies seriously? Have you been eating the foods that an allergy test 20 years ago showed you to be allergic to? Rashes are certainly associated with celiac disease, but even more commonly with allergies. Sorry for what are probably dumb questions, but if indeed you weren't taking the food allergies seriously, you might want to start.

B12 deficiency is very common in celiacs. If your B12 is ok, it would be comparatively unlikely that you have celiac disease. Granted, everybody's symptoms are different, but it would be unusual. That doesn't mean you couldn't have wheat allergy. Was that one of the allergies you tested for? (Celiac disease is an autoimmune disorder, not an allergy.)

Welcome to the board, and I hope you find your answer soon.

Thanks for the response.

I didn't take the allergy test seriously. It said that I was allergic to everything I ate on a regular basis. I didn't realize that you could be allergic to turkey. So I didn't follow the recommdendation to do an elimination test.

My B12 was WNL when it was checked. That was several years ago when I had the neuro symptoms.

I didn't think initially that Celiac was my problem but maybe gluten. I don't think I have a malabsorption problem but I do have a lot of other symptoms. I have an appt on 8/31 with a Celiac specialist. I guess I'll find out soon enoungh.

[Tabasco]

In addition to talking to your doctor about testing for celiac get to a derm and ask them specifically to look for DH, the skin form of celiac. They need to biopsy beside the rash not the rash itself. Here is a link to the NIH's article on DH. A diagnosis of DH is a diagnosis of celiac so if the test is positive you need no more testing after that, just the diet.

Open Original Shared Link

I have seen 4 dermatologists since this rash on my back and chest started. The rash also runs along my hairline and on my neck under my ears. I have gotten 4 different diagnosis. Keratosis Pilaris, dermatitis, shampoo allergy, lack of sufficient moisturizing in the winter. I've been told to bathe in glycolic acid, not wash my hair with anything scented, not to put any product in my hair, change detergents, use more moisturizer, and of course I have tons of steroid creams. It's kind of frustrating.

This rash does not look like the one I had as a child. This is a fine rash but it does itch. (The one I had on my hands as a child were the huge blisters.)

Maybe that's why DH was never considered. It's not typical. Or maybe it's my shampoo.

Thanks for the reply.

[tom]

If your B12 is ok, it would be comparatively unlikely that you have celiac disease.

Yikes!

B12 levels are NOT a useful test for celiac.

Many many MANY celiacs don't even have significant gastro symptoms, much less the level of villous atrophy req'd for serious malabsorption.

[The Fluffy Assassin]

Yikes!

B12 levels are NOT a useful test for celiac.

Many many MANY celiacs don't even have significant gastro symptoms, much less the level of villous atrophy req'd for serious malabsorption.

I think you're talking about apples and oranges. I have virtually no gastrointestinal symptoms, yet bear the obvious signs of 45 years of magnesium malabsorption (calcium leakage, therefore skinny bones, no muscles) and got to enjoy upwards of 30 years of anxiety and depression from B12 malabsorption, symptoms that vanished almost the minute I went off gluten. Just because I couldn't feel the damage to my intestines doesn't mean the damage wasn't done.

[Tabasco]

I almost forgot about mouth ulcers!

As a kid I had them all of the time. I thought that everyone did. My mom would treat them with Gentian's Violet. Needless to say, I had purple dots in my mouth frequently.

I just asked my husband and he said that he never had them. I still get them occasionally but not nearly like I used to. Now that I think of it, my siblings had them too.

AND...my kids get them. My daughter also has geographical tongue. I had NEVER seen or heard of this until my daughter was diagnosed with it. I read somewhere that it's a symptom of celiac disease.

I guess if I am diagnosed I should do the genetic testing and have my kids tested as well.

The list keeps growing.

[pchick]

AND...my kids get them. My daughter also has geographical tongue. I had NEVER seen or heard of this until my daughter was diagnosed with it. I read somewhere that it's a symptom of celiac disease.

I had this too when I was a kid ~ no one thought anything of it. I also came down with something called trenchmouth right after I had chickenpox in second grade... it lasted for 3 weeks ~ terrible thing, it was like my mouth was a big open sore.

Sorry, I don't even know if I have celiacs ... I'm like you, everything I read about it is like "OMG... I have that too!! My stool samples came back negative, but was still diagnosed gluten intolerant due to extremely low levels of IgA.

I'm also overweight and didn't think this could be my problem because everyone else who has it (like my sister) can't gain weight very easily at all. It's almost as sad as not being able to lose weight.

Good luck with your diagnosis... and even if it doesn't come out positive, I would recommend following a gluten free diet anyway. It's helped me IMMENSELY so far.

[nasalady]

This rash does not look like the one I had as a child. This is a fine rash but it does itch. (The one I had on my hands as a child were the huge blisters.)

Thanks for the reply.

The huge blisters sound like DH. Do you remember what they looked like when they were healing? Typically DH blisters turn dark purple as they heal and the purple spots take a long time (weeks/months) to go away.

JoAnn

[Tabasco]

The huge blisters sound like DH. Do you remember what they looked like when they were healing? Typically DH blisters turn dark purple as they heal and the purple spots take a long time (weeks/months) to go away.

JoAnn

I think that the hands heal differently than the arms. The blisters would form and itch like crazy. I would scratch them until they would pop open and eventually the skin would peel off. There were times when I had no fingerprints because my skin would crack and peel away.

Mostly my hands were just red and very swollen as they healed. I remember this being very painful and embarrassing.

My uncle does have the sores on his arms that I've seen pics of. He is mentally handicapped and we always thought that he self-mutilated but now that I look at the pics, it looks the same. Do the sores scab over? He is also diabetic and has bathroom issues. There may be some genetics at the root of this.

[nasalady]

I think that the hands heal differently than the arms. The blisters would form and itch like crazy. I would scratch them until they would pop open and eventually the skin would peel off. There were times when I had no fingerprints because my skin would crack and peel away.

Mostly my hands were just red and very swollen as they healed. I remember this being very painful and embarrassing.

My uncle does have the sores on his arms that I've seen pics of. He is mentally handicapped and we always thought that he self-mutilated but now that I look at the pics, it looks the same. Do the sores scab over? He is also diabetic and has bathroom issues. There may be some genetics at the root of this.

It's quite likely that your uncle's issues are related to yours. After the blisters pop, especially if you scratched them open, they can develop scabs.

[JillianLindsay]

Similarily I had malabsorbtion, fatigue, weakness, etc. issues and no GI symptoms. However, it is misinformation to tell someone that if their B12 is normal then they aren't likely to have celiac disease. My B12 was "low-normal" but my iron was ridiculously low. As you said, everyone manifests differently, so not having low B12 should not rule anything out.

I think you're talking about apples and oranges. I have virtually no gastrointestinal symptoms, yet bear the obvious signs of 45 years of magnesium malabsorption (calcium leakage, therefore skinny bones, no muscles) and got to enjoy upwards of 30 years of anxiety and depression from B12 malabsorption, symptoms that vanished almost the minute I went off gluten. Just because I couldn't feel the damage to my intestines doesn't mean the damage wasn't done.

[The Fluffy Assassin]

Similarily I had malabsorbtion, fatigue, weakness, etc. issues and no GI symptoms. However, it is misinformation to tell someone that if their B12 is normal then they aren't likely to have celiac disease. My B12 was "low-normal" but my iron was ridiculously low. As you said, everyone manifests differently, so not having low B12 should not rule anything out.

Apologies to you, Tom and to the original poster Tabasco. In the two years since I quit gluten, there must have been a fair amount of research going on. In 2007, the Merck Manual stressed B12 malabsorption above all. Now, they don't mention it: Open Original Shared Link Thanks to you and Tom both; I'm always glad to learn, and apologize again for inadvertent misinformation.

Edit: Home Edition does mention it, so I'm not a total idiot : Open Original Shared Link

[Tabasco]

Is it normal for the rash to wax and wane? Even if I've eaten gluten.

[Chuck8268]

Hi Everyone!

I'm new to the board. I don't even have an appointment yet but after all that I've read I'm calling a GE tomorrow! It seems that I've had symptoms since I was 8 yrs old. Who knew they might be related?

Here's my history:

Rash on hands - started at 8 yrs old until early 20's. Rash would blister and itch like the dickens. Many diagnosis from eczema to contact dermatitis. Lots of steroid creams all of my life. Spread to feet eventually.

Panic Attacks - 8 yrs old. I would tell my parents I had a stomachache but I now realize that it was panic attacks. They resolved after a couple of years.

Migraines[b] - Teens

Tingling in my arms - Teens. Saw a chiropractor and was diagnosed with degenerative disc disease in my neck.

Chronic Constipation - from 18 until now. I'm 44. Weekend laxatives became a way of life for a while.

Abdominal pain and Bloating - early 20's. Sometimes so bad that I couldn't go anywhere or wear certain types of clothes. Seemed to get worse with menstrual cycle and sleep diprivation.

Fatigue- early 20's.

Flatulence & Intermittent Nausea[b] - mid-20's. Doc's thought it was my gallbladder or that I produced excessive gastric juices. Ultrasound and upper GI.

Rashes - mid 20's. Diagnosed with food allergies this time after back scratch test which showed more than half of the foods tested. Didn't know about GS or celiac disease then and didn't take it seriously.

Panic attacks again- early 30's. Got really bad for about 2 years. Started seeing a therapist who diagnosed me with chronic low level depression (dysthmia).

Rashes - This time across my chest and back. Was diagnosed as having photosensitivity or sun allergy. Also had rosacea rash across the bridge of my nose and on cheeks.This lead me to be tested for lupus which was negative.

Constipation, abdominal pain and bloating- mid-30's. This time I was diagnosed with IBS. Told to add fiber to my diet and prescribed Bentyl for spasms.

Pain, tingling, numbness in arms and legs - 40. Tested for MS, lupus, B12 deficiency and spinal stenosis. All negative. I've also had my thyroid checked and it's ok. (2 yrs ago.)

So that brings me here. I have intermittant constipation / diarrhea and always gassy. Sometimes oily stools. (Gross...sorry) Still having fatigue and lack of energy. Lots of headaches. In fact, headaches pretty much have never gone away since my teens. Not migraines but every couple of years the migraines come back. Recently have had a lot of insomnia. (I may be peri-menopausal though.) Also recently diagnosed with very low Vit D deficiency. I don't go out in the sun since i was told I have a sun allergy.

Don't know about anyone else but I have felt like a hypochondriac most of my adult life. it seems that I have more "symptoms" than anyone I know. I feel like the girl who cried wolf.

I found this site becasue I have trouble losing weight since I turned 40. I was looking for hints and read an article that said gluten causes bloating. So I started reading up on gluten sensitivity and Celiac Cisease and it hit me like a ton of bricks! Could I have had this since i was a kid? OMG!! Since I don't have any trouble gaining weight, I assume that celiac disease isn't my problem. I certainly don't look malnourished!

So...I will call a doc tomorrow and hopefully get in soon. I came off of gluten for 2 days and the rash got a lot better. I got back on after reading about getting tested and the rash came back with a vengeance!

I'll let y'all know!

Stef

Stef

They are all syptoms of celiac disease,only thing I had that you did not was very bad diarrhea,but no rashes.Felt so much better post-Diagnosis,they put me on prescription iron, folic acid. B-12 shots fot a year. Gained 50 pounds too,then stopped.I hold a good weight now.

Chuck