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Ugh Displaced Mind

Lister

By Lister
in Coping with Celiac Disease

Recommended Posts

queenofhearts Explorer
queenofhearts
Posted

Lister, I know you are anxious about the meds, but give them a chance... eat something mild, drink some water, & try to relax. After a few days you'll begin to see the positive results. The meds won't cause any immediate damage, so try to give them some time to act on your inflammation.

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  • Replies 411
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jerseyangel Proficient
jerseyangel
Posted

It's gonna be ok, Lister.

I think you agonized so much about the pills, you gave yourself an anxiety attack!

Hope you can lay down, take a few deep breaths and relax. If you're at work, get caught up in something--stay busy so you won't have time to think about it. :)

queenofhearts Explorer
queenofhearts
Posted
well i was wrong i did get bit, it just took 2 days for them to show up for some reason, now i really dont wanna take the meds until these bug bites are gone, because if there west nile i need my defense up at 100% (yes it sounds silly to worry about west nile but the camp site we were at just had a breakout) i got one nice bite on my arm that itchs like hell. Im super dizzy this morning i hope the 2 are not related back to my worrying while getting ready for work bye

-------------

AHHHH wtf since when does it take 48 hours for masquito bites to show up, im coverd i have 5 so far and they all took 48 hours to develop now i itch everywhere

You are far more likely to suffer physically & mentally from an anxiety attack than from West Nile. Yes, it's out there, but still very rare in humans. And in fact, the delayed "bites"may even be hives brought on by anxiety & histimine inflammation, in which case the prednisone would be extremely helpful.

Lister Rising Star
Lister
Posted
  • Author

ok yes it was a panick attack and it went away, but i am having slight reaction to the meds

my stomic is becoming very sore, my vision is definatly slightly messed up, my body tempature is rised (making me hot) i know these are not from anxiety because i calmed myself, also my back is starting to really hurt (could just be normal pain) and i am super super super wound up hyper i cant controle my mouth like im spaztec like adhd spaztec from when i wasd 11 im bouncing all around

queenofhearts Explorer
queenofhearts
Posted
ok yes it was a panick attack and it went away, but i am having slight reaction to the meds

my stomic is becoming very sore.... finish in a sec gottta take drive thru

Remember, Lister, anxiety often triggers stomach distress, so it may not be the meds at all.

Did you eat something? Drink water?

Lister Rising Star
Lister
Posted
  • Author

i took the meds with lunch and water

CarlaB Enthusiast
CarlaB
Posted

You were very upset, the residual effects could still be lingering around and bothering your tummy.

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penguin Community Regular
penguin
Posted

Personally, I think it's still psychosomatic. You've been staring at these lists of possible side effects for more than a week, and now that you've taken the drug, you think you're having all of the side effects. I know I've done it! And sorry, it sounds like you're definitely still panicking.

Also, if your body temp was rising, you'd be cold, not hot.

And anxiety makes your stomach hurt. That's how ulcers happen :)

Lister Rising Star
Lister
Posted
  • Author

took first dosage at 9:45 when should i take second?? it says it gives problems sleeping and should take early, but i dont wanna take it to early while the other ones are still in effect

penguin Community Regular
penguin
Posted
took first dosage at 9:45 when should i take second?? it says it gives problems sleeping and should take early, but i dont wanna take it to early while the other ones are still in effect

How many times a day does it say to take it?

jerseyangel Proficient
jerseyangel
Posted
took first dosage at 9:45 when should i take second?? it says it gives problems sleeping and should take early, but i dont wanna take it to early while the other ones are still in effect

You should take this exactly as directed--what does it say on the label?

Lister Rising Star
Lister
Posted
  • Author

it doesnt, it just says take 2 twice daily for 4 days then take 1 twice daily for 5 days then take 1 daily for 7 days

jerseyangel Proficient
jerseyangel
Posted
it doesnt, it just says take 2 twice daily for 4 days then take 1 twice daily for 5 days then take 1 daily for 7 days

Well, I would take the first dose with breakfast and the second with dinner for the first nine days, and take the one at breakfast for the remaining 7 days.

Lister Rising Star
Lister
Posted
  • Author

well crap i took my first dosage with lunch (9:45- because of work) so i have to do them slightly diffrent when should my last dosage be? keep in mind acording to the pills and the pharamasist these cause problems sleeping (even though i feel fricking tired right now)

penguin Community Regular
penguin
Posted
well crap i took my first dosage with lunch (9:45- because of work) so i have to do them slightly diffrent when should my last dosage be? keep in mind acording to the pills and the pharamasist these cause problems sleeping (even though i feel fricking tired right now)

Personally, and this is just me, but I didn't have problems sleeping with these. For most people, 9:45 is breakfast. The important thing is spacing. For most people, the time between breakfast and dinner is 8-10 hours, so I'd say take your next dose at 8pm or so. That'll do you fine. If you have problems sleeping, take some benadryl and it will help (yes, it's gluten-free). :)

Lister Rising Star
Lister
Posted
  • Author

alright thanks for the advice oh and pegin your right on the money, i called my dx to make sure because i did not want to mess up and take to much to fast, he told me to take the next two at 8pm

jerseyangel Proficient
jerseyangel
Posted
well crap i took my first dosage with lunch (9:45- because of work) so i have to do them slightly diffrent when should my last dosage be? keep in mind acording to the pills and the pharamasist these cause problems sleeping (even though i feel fricking tired right now)

We're all different, but I never had a problem sleeping with steriods. (I've even had the long-lasting kind that are injected)

Since you took the first dose at 9:45, Can you take the second around 9PM?

See how it affects your sleep--if at all.

Tomorrow, take the first dose earlier--with breakfast. Then continue with it at dinner time.

That's just so the doses are close to 12 hours apart--it dosen't have to be exact, but you want to spread it as evenly as you can. Don't worry about the times being exact.

How are you feeling now?

Lister Rising Star
Lister
Posted
  • Author

umm i dont know kinda the same kinda not, my stomic is still slightly bothering me (usualy does around this time) but not nearly as bad as it usualy does, like its not knawing at me i can bare it like this. so maybe htey are working i dont know. i do know my head is really fogged up from them though

i would take it at 9 but it has to be taken with lots of food and as late as i can go for dinner is 8 if i wanna let it digest at all before sleep

besides for the pretty heavy fog im incrediably tired like really really tired, anyone else get this from these pills?- there supposed to make you really awake i hope the pills are working correctly

jerseyangel Proficient
jerseyangel
Posted

Lister,

I'm not surprised that you feel tired. You've been through a lot very recently--not the least of which the emotional upset you've had the past few days!

The meds are beginning to ease some of the inflammation--as you feel more comfortable, I think you'll calm down and allow yourself to sleep. That's the best thing for you right now.

Taking the pills at 8 or 9--that really dosen't matter too much--just so the doses are 10-12 hours apart. Don't obsess over that--just take them when you eat, and above all, relax and let them do their job.

Lister Rising Star
Lister
Posted
  • Author

man these pills are making my stretch marks show for some reason, they had finally died down

Lister Rising Star
Lister
Posted
  • Author

anyone know if these pills can cure anything? or do they just temporarly subdu the inflamation? or could it acually make it go away and not come back? basically im asking once im off the pills will i be back to the way i was? or will it acually change things for the better?

_____

not sure if its from pills or not but im having really bad chest pains in my right chest

queenofhearts Explorer
queenofhearts
Posted

The idea behind these pills is that they will put a halt to the vicious cycle of inflammation that is going on in your digestive system. Once you have eliminated the inflammation you will be better able to tolerate food, to digest, to get stronger. I've never taken them myself, but from what I've seen in those who have, the results last quite a long time-- long after the course of meds is over. It will give your system a chance to heal.

Lister Rising Star
Lister
Posted
  • Author

but once im all healed up will the inflmation just come back? like is it chronic and only temporarly meds will work?? or is once the inflmation gone it stays away?

queenofhearts Explorer
queenofhearts
Posted

If you take care & eliminate the things that were causing the inflammation, you can break the cycle & stay well. It's sort of like those mosquito bites-- if you scratch & scratch them they won't get a chance to heal. But if you let them alone, your body's healing power takes over & you get better.

Lister Rising Star
Lister
Posted
  • Author

how do i leave my stomic alone? should i start eating very very little for a few weeks? i dont quite understand how i take care of it?

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    • trents
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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