Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just So Sick Of This Disease.

ptkds

By ptkds
in Coping with Celiac Disease

Recommended Posts

ptkds Community Regular
ptkds
Posted

I am just so sick of this disease. I have been gluten-free since December, but I do get glutened often. And since starting the diet, new symptoms have popped up. The one that is bothering me the most right now is a huge canker sore on my tongue. And now whenever I get glutened, I get spots on my skin (unconfirmed DH) that itch like crazy. And I don't even know where I get glutened half the time. I just get sick even though I have been very careful. And why can't I be like the majority of celiacs and actually LOSE weight instead of gain weight. I am overweight, and I can't seem to lose anything.

I am just so tired of all of this, and I wish I could wake up from this nightmare. I am tired of being sick.

Just had to vent. I know I can "cry" on yall's shoulders.

ptkds

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pnltbox27 Contributor
pnltbox27
Posted

i hear you!!! i have some of the same issues so dont think you are alone in this.although i feel better i still have days of extreme gas and big d and i have no idea where i got glutened.also ive gained at least 10 pounds in the last 2 months since going gluten free. im already over weight at 250lbs know im hovering around 257. it makes no sense. i cut out fast food for the most part and im eating more veggies now than i have in my whole life. sorry i cant help you , but at least know your not alone

Nantzie Collaborator
Nantzie
Posted

I don't have anything useful other than a

{{{hug}}}

I hope that helps.

Nancy

confused Community Regular
confused
Posted
I am just so sick of this disease. I have been gluten-free since December, but I do get glutened often. And since starting the diet, new symptoms have popped up. The one that is bothering me the most right now is a huge canker sore on my tongue. And now whenever I get glutened, I get spots on my skin (unconfirmed DH) that itch like crazy. And I don't even know where I get glutened half the time. I just get sick even though I have been very careful. And why can't I be like the majority of celiacs and actually LOSE weight instead of gain weight. I am overweight, and I can't seem to lose anything.

I am just so tired of all of this, and I wish I could wake up from this nightmare. I am tired of being sick.

Just had to vent. I know I can "cry" on yall's shoulders.

ptkds

I so know what you are goign threw, Last night i told hubby i just want to be normal. We were at the park and either people were having dominoes or sub sandwhiches from subway as family picnic. I was so depressed. Now that we know for sure what is going on with my ss, it is even more depressing.

I am with you on the weight thing, I gained weight when i first went gluten free, now im afraid to even get on the scale to see if i gained or lost, but i think i have gained, my stomach is still big. I am actually thinking of going back on the 6wbm diet, when i lost lots of weight and felt the best i have ever, and since its mostly just fruits, veggies, meats and rice and potatoes, i know ill be eating gluten free lol

paula

Jo.R Contributor
Jo.R
Posted

You just said what I've been thinking. I have consistently been gluten since I started going gluten-free. I just found the source, Malt o Meal cereal that used to be gluten free. I must have read that it was gluten free on an old web site. That just made me mad. Before I got sick I actually found the strength to stick with a healthy diet and was losing weight. Then i got sick during the holidays and could eat veggie anymore. Then when I went gluten free I started gaining weight. tomorrow I start the Atkins diet. I know it's not the best, but I don't like fruit and can't handle veggie very well, so at least this way I will avoid being glutened and lose weight. I'm hoping that by the time I'm sick og the diet I can eat veggie again.

Hang in there! You are not alone.

chocolatelover Contributor
chocolatelover
Posted

Ptkds...I think you have hit a nerve here with many of us! I'm sorry you've been having such a rough time. Have you checked all of your cosmetics, shampoos, lotions, pet food, soaps, condiments, etc? Those things can all be hidden sources of gluten and even though you are not ingesting them directly, you could inadvertantly be digesting them. I also get the canker sores--they are the pits!

I have been gluten free for only a couple of months, and I find that some days are easy and some just plain aren't (like at midnight when I wanted a bowl of Honey Bunches of Oats but knew that would be a very bad thing for me to eat. But that's what I really wanted!). I lost 45 lbs doing the South Beach diet last fall and have managed to put back on at least 10 lbs since I went gluten free! It's very frustrating. I think it's happening because I am trying to replace the gluten filled carbs with the gluten free carbs, which is fine, except that the carbs are what got me into trouble in the first place! South Beach is actually very easy to follow, and because it has few carbs in it, it's very easy for us celiacs to do.

I also have been thinking about this since I read your post early this morning. One of the things that helps me a lot is having food already prepared that I can just pull out of the freezer when I want them--like pancakes, waffles, baked goodies (definitely NOT South Beach friendly, but they're there for when I want or "need" them!). I keep lots of snacks around that I know I can eat so I don't feel deprived. It's hard knowing that I can never just walk into a Wendy's and order a #2 or into the nearest pizza place and grab a slice. But there are alternatives and the more we talk about it and get out there, the more people are going to know about it!

Hang in there--you definitely are not alone, and this is a great place to "cry"

cyberprof Enthusiast
cyberprof
Posted
I am just so sick of this disease. I have been gluten-free since December, but I do get glutened often. And since starting the diet, new symptoms have popped up. The one that is bothering me the most right now is a huge canker sore on my tongue. And now whenever I get glutened, I get spots on my skin (unconfirmed DH) that itch like crazy. And I don't even know where I get glutened half the time. I just get sick even though I have been very careful. And why can't I be like the majority of celiacs and actually LOSE weight instead of gain weight. I am overweight, and I can't seem to lose anything.

I am just so tired of all of this, and I wish I could wake up from this nightmare. I am tired of being sick.

Just had to vent. I know I can "cry" on yall's shoulders.

ptkds

Hi PTKDS

I can relate to a lot of what you say. I am slowly working through the sources of my CC (used tupperware, colander, microwave at work, etc) and think I've been accidentally glutened once each week since 2/15/07.

I have 30 more pounds to lose. I have lost some since diagnosis, only because I've been too sick or too scared to eat...and that's not a healthy way to lose weight. And I'm with Jo R., I am having trouble with veggies and fruit when my stomach is upset, so I have rice a lot.

One thing I did do recently was to go on the South Beach Diet and also I did not replace bread, pizza, pasta with gluten-free. I do cheat sometimes but staying away from "white" carbs.

And then yesterday, my teenaged daughter showed me a rash that looks like DH. So I'm trying to cope with that too.

Hang in there. People on this board said that it takes a year to figure things out. I hope you get there faster.

~Laura

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
tomorrow I start the Atkins diet. I know it's not the best, but I don't like fruit and can't handle veggie very well, so at least this way I will avoid being glutened and lose weight.

After the initial phase of the Atkins diet, you do need to add in veggies. It's not safe to only eat protein for the long haul.

I had to overcook my veggies when I first went gluten-free ... not how I like them, but the only way my stomach would tolerate them. Now I am able to eat them cooked how I like. Soups made it pretty easy to overcook them.

whitball Explorer
whitball
Posted

I understand your pain. I have been gluten-free since 2/2006. It's been a year and I continue to struggle. Really, you need to keep your diet simple. Veggies, fruit, meats, etc. Don't try to add new foods until you master the basics. Adding new things must be slow and one thing at a time. I have recently discovered an intolerance to corn products. A set back? of course, but there is no other choice but to find the culprit and eliminate it. Use this site to help you with concerns and advice. Good luck to you.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
You just said what I've been thinking. I have consistently been gluten since I started going gluten-free. I just found the source, Malt o Meal cereal that used to be gluten free. I must have read that it was gluten free on an old web site. That just made me mad.

Whoopsie--Malt o Meal has never been gluten-free (malt is gluten); that old web site was wrong, as are half the nutritionists out there! :ph34r:

I'm so sorry so many of you are having a tough time. :(

Should we try to figure out where so many of you are getting glutened? I know I had a tough time the first few months til I figured it all out, thanks to all the help I got from this board.

You may need to eliminate dairy as well until your intestines heal. Also, I had a lot of trouble with the gluten-free bread substitutes at the beginning; it wasn't til a few months went by that I could handle them, so you might want to drop them from your diet just temporarily.

The things that got me through the first few months were Frito's Corn Chips, dark chocolate chips, and baked potatoes with soy sour cream and butter (which for some reason was not a problem). I did gain weight on the gluten-free breads and cookies, but lost very quickly when I cut them out of my diet, even though I was having tons of Frito's, rice potatoes, and chocolate. Go figure!

Hope that helps!

edit: I was also having a tone of fresh fruit and vegies, so it wasn't all unhealthy!

NoGluGirl Contributor
NoGluGirl
Posted

Dear ptkids,

I understand your pain as well. I get glutened due to being with inconsiderate relatives. Due to my ill health, I am stuck here against my will. They do not take it seriously. They do not think Celiac is that dangerous. I have to share a kitchen with them. :( I am hungry all the time, and still cannot lose weight either! My Thyroid whether it is slow or fast seems to make me overweight. That figures that we would not be like most typical people, where we would only lose the hope of ever losing a pound instead of weight like everyone else! Leave it to me to have a weird body that gains weight when it is supposed to lose it! You can complain anytime you want! Don't worry about it! :)

You have to vent sometimes!

Sincerely,

NoGluGirl

mandasmom Rookie
mandasmom
Posted
Dear ptkids,

I understand your pain as well. I get glutened due to being with inconsiderate relatives. Due to my ill health, I am stuck here against my will. They do not take it seriously. They do not think Celiac is that dangerous. I have to share a kitchen with them. :( I am hungry all the time, and still cannot lose weight either! My Thyroid whether it is slow or fast seems to make me overweight. That figures that we would not be like most typical people, where we would only lose the hope of ever losing a pound instead of weight like everyone else! Leave it to me to have a weird body that gains weight when it is supposed to lose it! You can complain anytime you want! Don't worry about it! :)

You have to vent sometimes!

Sincerely,

NoGluGirl

Im sorry you are struggling...perhaps a consultation with a knowledgable dietician might provide a fresh set of eyes to how you are eating and preparing your food....you deserve to feel well and it is possible to feel well again!! Good luck and hang in there!!

gfp Enthusiast
gfp
Posted
You just said what I've been thinking. I have consistently been gluten since I started going gluten-free. I just found the source, Malt o Meal cereal that used to be gluten free. I must have read that it was gluten free on an old web site. That just made me mad.

Hang in there! You are not alone.

Jo R. This is so typical.... I did exactly the same....except for me it was some tortilla chips with CC.

Before I got sick I actually found the strength to stick with a healthy diet and was losing weight. Then i got sick during the holidays and could eat veggie anymore. Then when I went gluten free I started gaining weight. tomorrow I start the Atkins diet. I know it's not the best, but I don't like fruit and can't handle veggie very well, so at least this way I will avoid being glutened and lose weight. I'm hoping that by the time I'm sick og the diet I can eat veggie again.

Honestly (and this aplies to everyone) the best thing you can do is just eat fresh food you prepare from scratch...

The chance of accidental glutening drops to nearly nil... you eat healthy by design and by not getting accidentally glutened and if you do slip up somewhere its easy to rectify because its not the Malt o Meal cereal or tortilla chips...

I did gain weight on the gluten-free breads and cookies, but lost very quickly when I cut them out of my diet, even though I was having tons of Frito's, rice potatoes, and chocolate. Go figure!

I don't see any problem explaining that.... most of the gluten-free breads etc. are just rubbish... and nutritionaly empty but of course we try and adapt the before to after... so we end up basically basing our diet on rubbish...

even though I was having tons of Frito's, rice potatoes, and chocolate.
Yes because you realise the Frito's are rubbish... rice is a decent source of nutrition and the chocolate you realise is rubbish...

Being a sensible person you realise a lot of rubbish isn't good for you so you eat it in moderation... whereas stuff like the really rubbish gluten-free products we eat in desperation not as treats...

Just about the worst diet is the one you think is healthy but isn't! There's nothing wrong with the odd treat even if your aiming to loose weight so long as you regard it as a treat!

NoGluGirl Contributor
NoGluGirl
Posted
Im sorry you are struggling...perhaps a consultation with a knowledgable dietician might provide a fresh set of eyes to how you are eating and preparing your food....you deserve to feel well and it is possible to feel well again!! Good luck and hang in there!!

Dear mandasmom,

I saw a dietician before. It was two or three years ago. She really never mentioned Celiac or anything. I told her what I ate, and she said I was on the right track. My main difficulty is having to be paranoid and exhaust myself obsessively cleaning and cooking part of the day. I cannot keep this up. I am going to have to start cooking one day a week from now on. I can do the prep before hand. I have very limited resources. Cookware is not plentiful. My parents are not careful at all. They do not take Celiac seriously. It is so annoying. I wish I were well so I could move out and work. I could have other issues besides Celiac, like Lyme. I have Candida for sure. Thank you for the encouragement!

Sincerely,

NoGluGirl

kbtoyssni Contributor
kbtoyssni
Posted

What catches my eye is that you get glutened often. Sounds like you may have to do some investigation into why and what you can do about it.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,311
    • Most Online (within 30 mins)
      7,748
    SWilson
    Newest Member
    SWilson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • 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.
×
×
  • Create New...