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In The Army And Over Seas With Celiac/dh. Help

haleysue

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haleysue Newbie
haleysue
Posted

I recieved this red rash on my elbow during my first deployment to iraq 05-06 now after using creams im covered HEAD TO TOE with these spots that hurts and burns. ITCHES BADLY. So, the doc at the hospital back inthe states looked at me and said that i had psoriasis. That was the day before i left to came back ti iraq. So when i got hree it got worse. So we all believe it is. WEll, fighting for my right ot get the meds i need they finaly order embrel for me. It came down to them sending me home just for them to get it over here. So im waiting for the shots to get here. I think this will be the first for embrel to be over here in the country (iraq). My mom has been sick for a while. Come to find out she was diagnosed with celiac spury. So, she told me to get tested. So a few days ago I went to the docs to let them know. He said they will have to send me home to get tesed. That means back to th estates. I haven heard anything about it so I went back to thedocs today. They told me to come back in the morning. So, my mom and dad (civilian doc) have been looking up on it and said it causes Dermatoligst heperfomitist, something like that, aka DH. IT describes all the signds and looks of what I have. Anyways, come to think of it the docs are treating for psoriasis and I havent even been medicaly diagnosed with it. No blood work or biops. HHHHMMMMM. So my civilian doc and parents tell me NOT to take the shot embrel. My mom doesnt want me to be a ginny pig. Also all we eat here isnt gluten free stuff. So, im headed to the doc in a few and I just dont know how to pushthis matter with them. I think they should have already tested me. I went to see doc for that reason and i got no response exsept for the fact they would have to send me home for the test. Well, I need actions not just words. SO. is my family and I making a big deal over nothing or should I get tested for DH and Celiac before I start any meds for my so called psoriasis? My parents read in the Gluten free bible that it is commonly mistaken for psoriasis , exema and other various skin dieases.

so what should I do? Just let them do what they want to do or stand up and push for some actions emediately? Please help. Its hard to handle thison my own overseas and my parents are trying and just dont know what to do. SO EVERYONES opinion will help me stand up and fight for whats right. It will helpmy family too. Thanks. SPC CARROLL, HALEY S. With HHC, 1 STB, 1BCT 101st ABN DIV stationed out of FT. Campbell K.Y. GOD BLESS

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truthsearcher Rookie
truthsearcher
Posted

Don't be a guinea pig

Don't take the shots.

Sounds like a clear case of DH.

Stand up for your rights.

And Thank You for your service

ravenwoodglass Mentor
ravenwoodglass
Posted

You are in a real tough spot. Do not let them give you something like embrel, it is not the proper med and it will mess with your immune system. That is if you have a choice. I realize if your command orders you to take it you have to. If they have to medicate you the drug you need is most likely dapsone, (but then of course they would have to recognize it as celiac, something they may be reluctant to do) although this will not stop the other immune mediated problems that go with celiac it will heal the sores.

The military is not real good at looking for celiac, they missed it in me 30 years ago and they missed it in my son in 2001. He was not diagnosed until he had gotten an early discharge for health problems that turned out to be celiac. My son is a neuropredominent celiac and his not being diagnosed almost cost not only his life but the lives of others when they started him on hoards of drugs. Fortunately he was hospitalized when they gave him the one the made him psychotic.

You say your Dad is a doctor, I would recommend that he get as much info on celiac as he can and get it to your command fast. Your base chaplin should be able to help with this if needed Make sure he also includes the neurotoxic effects, if he googles gluten and neurological effects lots will come up. If your condition excaberates while over there, very likely with the stress you are under now, it could hit you in unexpected ways. Your command might actually listen if they have the knowledge that this could impair you in ways that would be dangerous not only to you but to your unit.

Good luck and thank you for your service. Once you are diagnosed you will be discharged, being discharged hit my DS very hard, he felt that he failed somehow. Please realize you have no control over this.

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    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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