New Here And Have Quite A Few Questions.

[hadabaday2day]

Hi there. I am new here and I have many questions so please bear with me on what will no doubt be a long and disorganized post.

5 years ago I developed a nasty rash which took 3 doctors and a medical dictionary to figure out was Dermatitis Herpetiformis. They did a swab and that and it came back positive. Then they tested my blood and that came back positive. I have no idea if they did a whole panel or just a simple test, I was in the dark and confused and scared at that point. They told me a little about Celiac and sent me to a GI doctor. She told me that just because the test was positive didn't mean that I had Celiac Disease and said she didn't think I had it and sent me on my way. I didn't know anything, I was just happy not to have it.

Now almost 5 years later I find out that if you have DH and a positive blood test then that is a guarantee that you have it. I am fuming to say the least. It explains everything in my entire life. Some of my symptoms off the top of my head:

IBS

Headaches (misdiagnosed as migraines and tension headaches)

Cavities and mouth sores (despite brushing my teeth 25 hours a day, 8 days a week)

Joint pain

Leg muscle pain

Dehydration (almost every day really bad, and I drink tons of water)

I pee constantly which I attribute to the fact that my intestines are probably damaged and not absorbing water properly which explains the dehydration as well.

My toes go numb if I'm cold for like 3 minutes which is probably from bad circulation due to the fact that I am dehydrated like a prune

Exhaustion

Dizziness- probably just another dehydrated thing

Gas

Bloating

Heartburn

Chest pain

Arm muscle pain

Depression

I'm sure there is a ton more I just can't think of at the moment. My friends call me a hypochondriac because I always think something is wrong with me. Turns out something is always wrong.

I looked into Celiac disease back when they thought I had it before so I know quite a bit, but I do have some main questions I need answered.

1. Why have I never again had a DH rash? Does that make sense for me to get it once and never again. I thought it was a recurrent thing.

2. I have symptoms of lactose intolerance and have for most of my life. I don't usually drink milk but I do drink it in my coffee. I know that Celiac Disease causes lactose intolerance because of the damage to your intestines. So what I am wondering is if you can reintroduce lactose after you have been gluten free and your intestines have healed?

3. Do I need a biopsy or more tests or is it safe to just go gluten free? I don't have insurance at the moment and can't really afford a bunch of medical care. I will have insurance in a few months but they don't cover pre-existing conditions. So do I just go gluten free and find out about my intestinal damage later? Just need opinions on this one I guess.

4. Should I be getting tested for allergies? It seems a lot of other people have other allergies along with thier Celiac Disease.

I had my kids tested yesterday and will get the results back next week. I hope they don't have it, but I am kinda worried that they do. My 7 year old daughter has always suffered from sporadic headaches and stomach aches. My 2 1/2 year old son has had trouble from the get go with throwing up breastmilk and ending up on a hypoallergenic formula. Then we finally transitioned to regular milk which was no good, so he ended up on Lactaid which has been better but he still has unexplained bouts of diarrhea. He also has eczema, but he breaks out in weird rashes and one time he had full on hives, all of which they have pinned as "an atypical reaction to his eczema." Bull-honky! They are also both really cranky. I'm sure all kids are, but irritability seems to be a common symptom in kids and sometimes it just seems that they don't even know why they are cranky, they just can't help it.

So, sorry for the rambling. If you can answer some or all of my questions I thank you in advance. And any advice on where I should go from here as far as health care would be much appreciated. I live in Washington state if anyone knows a good doc. I haven't run across any in my lifetime. Thanks a bunch!

Alia

Oh I also wanted to add that I have some lumps in my neck which are in the area on the side of the neck where you have a chain of lymphnodes. My doctor thinks they are nothing. After much research and lots of risk factors I believe that I have Thyroid cancer. Only today did I find out that Celiac disease and thyroid cancer can be related. How do you go about getting diagnosed with cancer if you have no insurance, no extra money and no doctors who will take payments?

[mushroom]

Hi there. I am new here and I have many questions so please bear with me on what will no doubt be a long and disorganized post.

5 years ago I developed a nasty rash which took 3 doctors and a medical dictionary to figure out was Dermatitis Herpetiformis. They did a swab and that and it came back positive. Then they tested my blood and that came back positive. I have no idea if they did a whole panel or just a simple test, I was in the dark and confused and scared at that point. They told me a little about Celiac and sent me to a GI doctor. She told me that just because the test was positive didn't mean that I had Celiac Disease and said she didn't think I had it and sent me on my way. I didn't know anything, I was just happy not to have it.

Now almost 5 years later I find out that if you have DH and a positive blood test then that is a guarantee that you have it. I am fuming to say the least. It explains everything in my entire life. Some of my symptoms off the top of my head:

IBS

Headaches (misdiagnosed as migraines and tension headaches)

Cavities and mouth sores (despite brushing my teeth 25 hours a day, 8 days a week)

Joint pain

Leg muscle pain

Dehydration (almost every day really bad, and I drink tons of water)

I pee constantly which I attribute to the fact that my intestines are probably damaged and not absorbing water properly which explains the dehydration as well.

My toes go numb if I'm cold for like 3 minutes which is probably from bad circulation due to the fact that I am dehydrated like a prune

Exhaustion

Dizziness- probably just another dehydrated thing

Gas

Bloating

Heartburn

Chest pain

Arm muscle pain

Depression

I'm sure there is a ton more I just can't think of at the moment. My friends call me a hypochondriac because I always think something is wrong with me. Turns out something is always wrong.

I looked into Celiac disease back when they thought I had it before so I know quite a bit, but I do have some main questions I need answered.

1. Why have I never again had a DH rash? Does that make sense for me to get it once and never again. I thought it was a recurrent thing.

2. I have symptoms of lactose intolerance and have for most of my life. I don't usually drink milk but I do drink it in my coffee. I know that Celiac Disease causes lactose intolerance because of the damage to your intestines. So what I am wondering is if you can reintroduce lactose after you have been gluten free and your intestines have healed?

3. Do I need a biopsy or more tests or is it safe to just go gluten free? I don't have insurance at the moment and can't really afford a bunch of medical care. I will have insurance in a few months but they don't cover pre-existing conditions. So do I just go gluten free and find out about my intestinal damage later? Just need opinions on this one I guess.

4. Should I be getting tested for allergies? It seems a lot of other people have other allergies along with thier Celiac Disease.

I had my kids tested yesterday and will get the results back next week. I hope they don't have it, but I am kinda worried that they do. My 7 year old daughter has always suffered from sporadic headaches and stomach aches. My 2 1/2 year old son has had trouble from the get go with throwing up breastmilk and ending up on a hypoallergenic formula. Then we finally transitioned to regular milk which was no good, so he ended up on Lactaid which has been better but he still has unexplained bouts of diarrhea. He also has eczema, but he breaks out in weird rashes and one time he had full on hives, all of which they have pinned as "an atypical reaction to his eczema." Bull-honky! They are also both really cranky. I'm sure all kids are, but irritability seems to be a common symptom in kids and sometimes it just seems that they don't even know why they are cranky, they just can't help it.

So, sorry for the rambling. If you can answer some or all of my questions I thank you in advance. And any advice on where I should go from here as far as health care would be much appreciated. I live in Washington state if anyone knows a good doc. I haven't run across any in my lifetime. Thanks a bunch!

Alia

Oh I also wanted to add that I have some lumps in my neck which are in the area on the side of the neck where you have a chain of lymphnodes. My doctor thinks they are nothing. After much research and lots of risk factors I believe that I have Thyroid cancer. Only today did I find out that Celiac disease and thyroid cancer can be related. How do you go about getting diagnosed with cancer if you have no insurance, no extra money and no doctors who will take payments?

Gosh, hadabaday2day, sounds like you had a bad5years and a badoc to boot.

If you had a positive diagnosis 5 years ago, then you are a celiac. Many of us are not even able to get a positive diagnosis to rely on. How can a doc send you on your way with a positive diagnosis??? There is never, to my knowledge, a false positive, only false negatives. It really depends on what they actually tested you for. A positive DH test is always a positive celiac test whatever other tests they did. The blood tests and endoscopy can be negative but the DH is not. But for DH they have to biopsy beside the lesion; I have never heard off a swab test. Did they actually do a biopsy? Do you have a copy of the blood tests they did that you could post here?

I have no idea why you have never had DH again. My dh has had it only once when he started cheating on the gluten-free diet. But if you have been eating gluten for 5 years, it beats me.

Your second question about lactose intolerance--have you ever been gluten free? A lot of us can handle lactose again once our villi have healed, because we need functioning villi to digest the lactose. Others cannot ever handle lactose again. It was not totally clear to me if you ever tried the gluten-free diet.

It is always safe to eliminate gluten from your diet. The only reason to not do it is if you need a formal diagnosis by blood test or endoscopy, but it seems like you already have you formal diagnosis with the DH diagnosis, assuming they did a biopsy and not a swab (I have never heard of this being diagnostic--what did they swab?)

As for other food intolerances, most of us find out by trial and error, through elimination of the things that seem to bother us. I have given up soy, corn, nightshades; had already give up lactose and caffeine and most corn before I decided gluten was the main problem (no, I don't have a formal diagnosis--too many doctors visits with false diagnoses, nobody ever thought to test me for celiac).

Your children's symptoms certainly sound like they could have inherited the genes for celiac. Do let us know their results.

I have no expertise in thyroid problems; in fact am still wondering if I have them myself so will let others address this issue.

I am so sorry you have had five years of suffering through what appears to be bad medical advice. If I were you I would never knowingly eat gluten again and would try my best to make darned sure I didn't. It is, of course, easier said than done because of all the sneaky places gluten hides. You will read and hear more about this on this forum. IMHO, you are in the right place. Welcome to the forum. Others will give you better advice than I can.

[Mother of Jibril]

Oh I also wanted to add that I have some lumps in my neck which are in the area on the side of the neck where you have a chain of lymphnodes. My doctor thinks they are nothing. After much research and lots of risk factors I believe that I have Thyroid cancer.

Hi Alia,

I agree that you already have your answer... give the gluten-free diet a serious try and see how you feel! A positive response to the diet is another diagnostic tool.

I have autoimmune hypothyroidism and a (painless, solid) lump in one of the lymph nodes under my left jaw. I wouldn't jump right to the idea of "cancer" although it's worth being cautious. Another possibility... especially since you mentioned being dehydrated... is Sjogren's syndrome. It can dry out everything in your body: eyes, mouth, nose, throat, skin, genital area... and it can also make you constipated and give you enlarged lymph nodes. There's no cure , although a gluten-free diet might make your symptoms better. There are also different tricks to re-moisten parts of your body. This is a good place to start for information: Open Original Shared Link

By the way... my son has a severe intolerance to casein, the protein in cow's milk. Lactose-free milk doesn't help... it's in ALL dairy products. That could be why your son is still having a reaction.

[ang1e0251]

It sounds like your whole family could benefit from a very simple whole foods diet with no gluten and no dairy. You may be able to come back to the dairy or some dairy at a later time.

You don't need a dr's permission to try the diet. You know how you and your children feel better than anyone. Trying the diet is not harmful in any way. You will know if you all feel benefits soon enough. Since you've already had a diagnosis, go fot it. I'm betting you and your family will feel better.

The thyroid you should keep an eye on. I would ask your dr's office how you can get help with medical care if you need it. They would probably be able to refer you to local or state benefits.

[hadabaday2day]

Gosh, hadabaday2day, sounds like you had a bad5years and a badoc to boot.

If you had a positive diagnosis 5 years ago, then you are a celiac. Many of us are not even able to get a positive diagnosis to rely on. How can a doc send you on your way with a positive diagnosis??? There is never, to my knowledge, a false positive, only false negatives. It really depends on what they actually tested you for. A positive DH test is always a positive celiac test whatever other tests they did. The blood tests and endoscopy can be negative but the DH is not. But for DH they have to biopsy beside the lesion; I have never heard off a swab test. Did they actually do a biopsy? Do you have a copy of the blood tests they did that you could post here?

I have no idea why you have never had DH again. My dh has had it only once when he started cheating on the gluten-free diet. But if you have been eating gluten for 5 years, it beats me.

Your second question about lactose intolerance--have you ever been gluten free? A lot of us can handle lactose again once our villi have healed, because we need functioning villi to digest the lactose. Others cannot ever handle lactose again. It was not totally clear to me if you ever tried the gluten-free diet.

It is always safe to eliminate gluten from your diet. The only reason to not do it is if you need a formal diagnosis by blood test or endoscopy, but it seems like you already have you formal diagnosis with the DH diagnosis, assuming they did a biopsy and not a swab (I have never heard of this being diagnostic--what did they swab?)

As for other food intolerances, most of us find out by trial and error, through elimination of the things that seem to bother us. I have given up soy, corn, nightshades; had already give up lactose and caffeine and most corn before I decided gluten was the main problem (no, I don't have a formal diagnosis--too many doctors visits with false diagnoses, nobody ever thought to test me for celiac).

Your children's symptoms certainly sound like they could have inherited the genes for celiac. Do let us know their results.

I have no expertise in thyroid problems; in fact am still wondering if I have them myself so will let others address this issue.

I am so sorry you have had five years of suffering through what appears to be bad medical advice. If I were you I would never knowingly eat gluten again and would try my best to make darned sure I didn't. It is, of course, easier said than done because of all the sneaky places gluten hides. You will read and hear more about this on this forum. IMHO, you are in the right place. Welcome to the forum. Others will give you better advice than I can.

I have a terrible memory but you are right, I think they did do a biopsy. I just remember she was going to take a sample of my tissue where I had the rash and I asked how bad it was going to hurt. So yes, I think it was in fact a biopsy. I have no blood test results to post as I don't have those medical records. They said my records are in storage so I'm having them dig them up. I have never been gluten free so I don't know about the lactose. Thanks for your response.

Alia