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Hayhay17

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Hayhay17 Rookie
Hayhay17
Posted

Hi, 

This is my first post and I would appreciate any help/advise really before I see my GP again next week. 

I am based in the U.K and I have been back and forward the doctors to try and get to the bottom of what is wrong with me but they keep fobbing me off. 

I am convinced I have celiac disease and Dermatitis Herpetiformis.  I also believe my B12 levels are low and in the grey area and that I should be treated for this as I am showing lots of symptoms linked to low B12 levels. 

My sister has recently been diagnosed with celiacs. 

I have been getting this red, burning, itchy rash on my chin since the beginning of April. Almost like sunburn, very uncomfortable. It comes and goes. Then a couple of weeks ago I got some tiny singular blisters dotted around on my chin. I had been taking an iodine supplement and was unsure if this was causing the blisters.  The doctor thought it was herpes and I have been on anti virals since. The blisters went but 2 have re-appeared today, symmetrically on either side of my chin. Another doctor I saw seemed to think it was Rosacea (he said he couldn't see the blisters although they were there) and has given me an anti inflammatory cream to put on my chin. This seems to have calmed the burning but I also have lots of yellow heads coming and going too (my skin is usually very clear so this is very unusual).  And obviously the 2 tiny blisters have appeared again. 

I cannot interpret my blood results and wondered if anybody can help? I'm sure there are lots of people on here who know more than some doctors. 

My results read as follows: (I have copied what it says

Tissu transglutaminase IgA lev - 0.3 u/mL
Range: <10.00 u/mL
Normal no action
Anti-Tissue Transglutaminase (tTG
Results between 7-10 u/mL are considered Equivocal

B12/Folate
Serum vitamin B12 - 241 ng/L
Range: 200-770ng/L

Serum Folate - 7.5ug/L
Range: 3.90 - 26.80ug/L

At one point last year while pregnant my B12 dropped to 169ng/L but I was never treated. 

I have read that you can have an IgA deficiency which can not show accurate results but I am wondering what levels mean you have this deficiency? Is 0.3 deficient? 

Does this sound like it could be Dermatitis Herpetiformis?

I am new to all this and don't really understand it all to be honest so have been researching as much as possible. 

Sorry for the long post but I'm hoping somebody can help. 

Thanks 

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RMJ Mentor
RMJ
Posted

The three tests you list are all in the normal ranges.  The TTG IgA test does not look for IgA deficiency, it looks for IgA only against TTG.  The tests you list do not show whether or not you are IgA deficient.

 

Hayhay17 Rookie
Hayhay17
Posted
  • Author
5 hours ago, RMJ said:

The three tests you list are all in the normal ranges.  The TTG IgA test does not look for IgA deficiency, it looks for IgA only against TTG.  The tests you list do not show whether or not you are IgA deficient.

 

Thank you for the reply. 

emma6 Enthusiast
emma6
Posted

i agree that your b12 seems on the low side to me, mine is over 700ng as i was taking tablets for years. it won't hurt to get some b12 tablets or drops

you could also ask for a total iga test and the full celiac panel if you want more testing some people do test negative to ttg iga and still have celiac so it doesn't rule it out

 

Hayhay17 Rookie
Hayhay17
Posted
  • Author
5 minutes ago, emma6 said:

i agree that your b12 seems on the low side to me, mine is over 700ng as i was taking tablets for years. it won't hurt to get some b12 tablets or drops

you could also ask for a total iga test and the full celiac panel if you want more testing some people do test negative to ttg iga and still have celiac so it doesn't rule it out

 

Thanks for the reply.

I have started to take some B vitamins to see if that helps. I will ask for a re test maybe in a few weeks for that. 

 

My doctor said he doesn't want to do any more tests for celiac as it can do more harm than good! I assume he meant with a biopsy. 

emma6 Enthusiast
emma6
Posted

did you get your iron levels tested aswell? thats also quite a common deficiency for people with celiac

i've read people with DH are also less likely to test positive on the blood tests and have more patchy intestinal damage.

i also have a rash which i think is DH but every doctor thinks it is something different so that seems to be quite common as most of them haven't seen it or believe its so rare that no one has it. then when i google the rash's they suggest it sounds nothing like what i have haha

one of the things that really stands out to me is that i get stinging and itching about 24 hours before the blisters appear then it calms back down into a rash after a few days. which is described in dh but not in any of the the rashes the doctors suggest

if you going gluten free to see if there is any improvements just be aware that people can still have it for months after going gluten free so if it doesn't improve straight away that doesn't nesscessarily mean its not DH

Hayhay17 Rookie
Hayhay17
Posted
  • Author
5 hours ago, emma6 said:

did you get your iron levels tested aswell? thats also quite a common deficiency for people with celiac

i've read people with DH are also less likely to test positive on the blood tests and have more patchy intestinal damage.

i also have a rash which i think is DH but every doctor thinks it is something different so that seems to be quite common as most of them haven't seen it or believe its so rare that no one has it. then when i google the rash's they suggest it sounds nothing like what i have haha

one of the things that really stands out to me is that i get stinging and itching about 24 hours before the blisters appear then it calms back down into a rash after a few days. which is described in dh but not in any of the the rashes the doctors suggest

if you going gluten free to see if there is any improvements just be aware that people can still have it for months after going gluten free so if it doesn't improve straight away that doesn't nesscessarily mean its not DH

No, don't think I got my iron tested ... will ask them to test that too.

I know what you mean. The doctors I've seen seem to want to just diagnose a common type rash just to get you out the room I think as I've seen a few different doctors in my surgery who have all suggested different things! 

My chin has this intense burning, almost like bad sunburn. The blisters seem to appear either side of that though. 

where do you get your blisters? On your face? 

If the doctor won't do any more for me I guess I will just have to go gluten free myself and hope that helps. 

They keep putting everything down to recently having a baby (6 months ago) which is so annoying as I know that's not it. 

Thanks for your reply. 

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emma6 Enthusiast
emma6
Posted

mine is a small patch in the exact same place on both arms, legs and hands, i've never had anything on my face. not sure if that is common or not. that sounds very frustrating to have everything blamed on having a baby. hope you get some answers soon

Hayhay17 Rookie
Hayhay17
Posted
  • Author
On 18/05/2017 at 1:16 PM, emma6 said:

mine is a small patch in the exact same place on both arms, legs and hands, i've never had anything on my face. not sure if that is common or not. that sounds very frustrating to have everything blamed on having a baby. hope you get some answers soon

Thank you appreciate it. 

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