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I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head. I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time. So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my knees down to my ankle... called the dermotoligist and she said nothing to worry about.... Weird...

2) I began having some pain in my tail bone then pain in my wrist joints. The doctor gave me a athritis test and x-rayed my tail bone and said I was fine. Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own... but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ? Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me. Please give me some advise I could use........

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I too have had all kinds of changes/wierd things happening since going gluten-free. My skin has totally changed, I am often itchy and get rough dry skin off and on, mostly on. My skin was never dry before, I wasn't itchy before. I get very wierd joint pain and other pain and then it goes away but I also feel stronger everyday. My theory is that things are working themselves out now that it is getting some nutrition.

Maybe working out so heavily isn't such a good idea right now, your body may need time and energy to catch up internally before devoting so much to muscle output? My belief is that it is good to keep moving, your lymph system cannot function to move waste unless there is some movement, but if there is too much waste to move to quickly along with other biological functions that need to start running properly and organs/glands that need to get the nutrition your hopefully now absorbing...that is a lot to ask of your system. Just a possibility.

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I was diagnosed with Celiac sprue in May and was relieved for the past 14 + years this was not all in my head.  I went on a all protien diet at first not knowing what I should eat?? I live in a very rural area and gluten free just was not a issue in fact the hospital dietian only had one other patient that was a celiac at that time.  So I have had to learn on my own the hardway and now I am very sensitive to gluten but I have several other things happening that I am not sure is related to being a celiac so I need to ask all of you ..

1) I sometimes break out in the itchies from top to bottom... I had seen a dermotologist and they biospied me but did not find what they are looking for.. At the time I had three hershey bars (one a day) then later found out candy is often dusted with flour and do not list it as a ingredient... I am taking allergy medicine every other day to prevent a scratch attack .. Has anyone else had this problem ?

I did break out last week with little bumps mostly unvisible in the back of my  knees down to my ankle... called the dermotoligist and she said nothing to worry about....  Weird...

2) I began having some pain in my tail bone then pain in my wrist joints.  The doctor gave me a athritis test and x-rayed my tail bone and said I was fine.  Last night the pain was horrible in my shoulder bones, arm joints, wrist and all the bones in my fingers.. Has anyone experienced such pains ?

3) I am very active and exercise vigorously 7 days a week usually and had lost a lot of weight prior to this whole celiac bizz on my own...  but when I finally found a bread that I can finally choke down I gained 10 pounds and I am afraid to gain anymore... any suggestions ?  Most celiacs I have read about are worried about being so thin, wish I had that problem.

I know I should be able to get this information from my doctor but this last visit he though the only food I was to avoid was wheat... Boy that really worried me.  Please give me some advise I could use........

It is possible you may have Dermatitis Herpetiformis

Dermatitis Herpetiformis is a rare condition with a very itchy rash.

DH associated with Coeliac Disease.

It is, however, difficult to diagnose and not many skin specialists understand about it.

You can see examples & descriptions of DH & ask for advice on this website.

http://www.dermatitisherpetiformis.org.uk/

Bone pain can indicate low bone density which is a risk for coeliacs.

Have you had a DEXA scan? This can show the state of your bones.

Please see :

http://coeliac.info/suppboard/viewtopic.ph...&highlight=dexa

I used to be underweight before diagnosis. Then I could eat any food & it would rush through me as my body tried to get rid of the gluten.

When you are diagnosed with celiac disease your body can recover on the gluten-free diet & it absorbs more, including the calories!

However, being overweight could indicate a thyroid problem which is sometimes found in coeliacs, so you might want to have your thyroid checked - but I think you may find you are just absorbing more food now your guts are healing.

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Careful with low calcium intake: celiacs tend to improperly absorb calcium and also eliminate milk products from their meals. Just be sure you get enough calcium (1g per day is needed, I believe, check other sources too).

And yes, I, too, suffer from different forms of skin problems (incl dandruff), that get worse when my digestive problems get more severe, and I'm pretty sure they are related. However, you indicate even worse symptoms than I ever had, so you should have a trip to a city with better doctors to check your condition.

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    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
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    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
    • Hi there, I hope you're all having a good day! I'll be heading on a week-long Carnival cruise shortly and had a few questions: -What is the tipping protocol? I've prepaid gratuities, but feel like the food request will warrant something extra. Should I tip the headwaiter? Hostess? Regular waiter? Chef? Those cooking at, say, the sandwich or pasta bars? If so, how much is appropriate, and should I tip at the beginning of the cruise, the end, or split it up? -It looks like the main dining room will be closed during lunch hours on most days. Any recommendations on safe bets for midday meals? I'll be on the Carnival Sunshine, for what that's worth. Thank you so much for any information you can share!  
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