Jump to content

  • 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

Quite Disheartening....

Canadian Karen

Recommended Posts

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Guys,

Today I had the follow up with Dr. Moore regarding the budesonide treatment. Here's the scoop:

The budesonide is helping with, although not taking away totally, the diarrhea. What really concerns him is that my ttg levels are still over 100.... :( HOW??? :huh: I don't understand it..... :(

Next course: Prednisone. Because of two possibilities:

1) Budesonide is not doing the trick, which the next course would be prednisone.

2) Budesonide has taken care of the collagenous colitis and my remaining

problems are due to unresponsive celiac.

Either scenario, prednisone would be the next step, so that's the way we go.....

He can't understand my reaction to budesonide. I have gained a tremendous amount of weight in a short period of time and it also gave me LOTS of headaches. He says both are not normal responses to budesonide. But he did say he could see "steriod residuals" around my face (puffiness, I guess). So, my worry is, if budesonide did this to me, I CAN JUST IMAGINE WHAT PREDNISONE WILL DO!!!! :unsure:

Not happy, not happy at all....... I am so 100% SURE I am 100% gluten free!

This is so disheartening.... :(

Karen

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

Celiac.com Sponsor (A8-M):


plantime Contributor
plantime
Posted

Awww, Karen!! {{{{hugs}}}}

tarnalberry Community Regular
tarnalberry
Posted

Awww... I'm sorry. :-(

Pred can be nasty stuff (it makes me b%$@#y is just 10 days :-) ) but hopefully it'll do the trick. The tTg levels are suprising. I'd do the "are you really really really sure that no one is letting a crumb fall into your food and your toothpaste is friendly" questions, but you already answered that question.

KaitiUSA Enthusiast
KaitiUSA
Posted

aww Karen I'm sorry....hang in there :D we are all here for you

celiac3270 Collaborator
celiac3270
Posted

Awww...I'm so sorry to hear that you can't shake your symptoms completely :( . Feel better! You said your antibodies were high....but didn't you say awhile ago that budesonide might contain gluten, or was questionable? Oh well--I'm not a doctor--feel better, though. :(

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

I had checked with the manufacturer for budesonide. Apparently, budesonide is gluten free in Canada but not in the U.S.......

What confuses me is I don't feel "unwell", at least the way that I used to. Sure, my joints are still really bothering me, but all the gastro symptoms (bloating, abdominal pain, etc. etc.) is gone. The diarrhea is only about 20% of what it used to be, so even that is improving. Why are my levels still so high? :unsure:

He said that there is every possibility that a good dose of prednisone will clear it up and it just might be the "push" my system needs to get a fresh start..... But again, I KNOW 100% THAT I AM 100% GLUTEN FREE!!!! Anything and everything that touches or enters my body has been checked, re-checked and triple checked!!

Karen

Carriefaith Enthusiast
Carriefaith
Posted

Hey Karen, I'm sorry to hear that :(

I was just wondering how long you have been gluten free?

As you know, I too have been stuggling and not getting better. I thought I was never going to get better. The doctors told me I had IBS in addition to celiac and I thought I was going to be like this for the rest of my life. However, within the last 2 weeks or so I have seen some improvements... :D not 100% but improving! (Knock on wood :lol: ) My diarrhea is also about 20% of what it was even 2 weeks ago! My improvments can only be one of two things (I think).

1. Either it just took 1 year for my body to finally heal itself OR

2. Like you I also thought I was 10000000% gluten free... but I really evaluated my diet and found that Humpty Dumpty produces all their gluten and gluten free chips on the same line without washing <_< I was eating their corn chips nearly every day. Last year I had read that chips were gluten free from 2 different sources but didn't know about this cross-contamination issue until recently.

I'm not sure which one it is... but there is hope! I hope you find an answer without having to take those nasty meds :(

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

Celiac.com Sponsor (A8-M):


Guest Viola
Guest Viola
Posted

I'm so sorry to hear that it isn't clearing up quicker. Perhaps the doctor is right and hopefully you will only have to be on the prednisone a very short time. Do be very careful of avoiding anyone with flu or something like that. Prednisone does a number on the immune system. :huh:

Hugs :)

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Hi Carrie,

I also eat Humpty Dumpty potatoe chips exclusively.... The reason I do is because of the fact that there have been so many references to cross contamination in the Lays. But I didn't know there was also cross contamination with Humpty Dumpty. Potatoe chips are my main snack......

I would absolutely love it if that was the source, but would that make my numbers still be so high? :huh:

Karen

flagbabyds Collaborator
flagbabyds
Posted

If you eat something everyday then it can make your numbers really high. Even the slightest bit can make you go off the charts. Defenitley take those chips out of your diet because that coud be what is causing you all this pain.

Hope you feel better soon! :)

Carriefaith Enthusiast
Carriefaith
Posted
I would absolutely love it if that was the source, but would that make my numbers still be so high?

Well I don't know, but I have been a lot getting better within the last few weeks and I just elminated them from my diet about a month ago. I have a feeling that they were causing my problems. It's just kind of convenient that I cut them out of my diet and then I start feeling better.

I feel bad :( I think I was the one that said they were ok to eat :unsure:

My sources said they were gluten free but I didn't know they were cross contaminated until I went to my celiac meeting a month ago. I got a product list that said that they don't wash between lines. It's my fault for not calling to make sure.

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Hey, Carrie, honestly, it wasn't you..... :P

I always go by the Delphi list for EVERYTHING!!!

So, please, don't even entertain the thought that it was in any way your fault!! :)

This is just another bump in the road.... <_<

This too shall pass, eh celiac3270? ;)

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

Karen

Do you also use gluten free products?

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Yep.

Aim toothpaste, Pantene hair products, Vaseline Intensive Care Hand Lotion,

All my vitamins, supplements etc. Jamieson.

I don't wear make-up.

I use Vaseline Lip stuff.....

Altoids mints only.....

Sunlight dish soap. Gain laundry detergent. Bounce sheets.

The only POSSIBILITY that I could conjure up would be I am not being careful enough with the kids' food. I am the only one gluten-free, so I have to fix dinners for gluten eaters, including breads, donuts, toast, etc. etc...... Perhaps I am not scrubbing enough in between fixing theirs and fixing mine. Although I though I was.... :( I don't bake with wheat flours at all - all gluten-free flours.... so nothing in the air.....

Grrrrr....... :angry:

Karen

lcmcafee2 Newbie
lcmcafee2
Posted

Karen,

I read the concern about taking Prednisone and wanted to share with you my experience with it.

Taking the Prednisone wasn't too bad for me, maybe you'll be OK with it as well. I first took 10 mg for a week and did notice mood changes :angry: , but no let up on the symptoms. :(

Then a couple of months later the doctor put me on it again at 10mg for a week, 5mg for a week 2.5mg for a week then 2.5mg every other day for a week. I finished the last dose 2 months ago and the diarrhea is gone. I am glad to see some positive results finally! I had that bout of diarrhea since last Summer :blink: I really did not have any bad side effects from that second round of Prednisone. I was told not to have surgery for a year since I had taken so much of it. I didn't get the "moon face" or any weight gain.

Now, I am keeping a food journal and following up with some other tests from the doctor for fatigue I cannot seem to get past.

If you have to take it .... I wish for you the same "good" results! :D

Laura

KaitiUSA Enthusiast
KaitiUSA
Posted

Karen

Do you wash your hands after making their meals? It can be easily cross contaminated since they eat gluten. Do you ever go to your food after handling theirs..you could easily be getting traces in that way

Hope you find the culprit of the reaction....

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Hi Laura,

That's exactly the way he has me taking it. I can't remember the exact doses, as I gave the prescription to my husband this morning to go get it filled. But it is on a weekly decrease. He also wants me to continue taking the budesonide, one per day, at the end of the prednisone, to "maintain" it......

Kaiti,

To be totally honest, if I have to say whether or not I wash my hands 100% of the time between their food and mine, I would have to say no. When I get their dinners ready, then go to fix my own, the scenario is like this:

I am fixing my food......

"Mom, can I have some more bread?"

"Okay, here you go honey".... (wash my hands again and continue with mine)....

"Mom, can I have the crust cut off please?" <_<

"Okay, here's the crust cut off"..... (wash again, continue with mine.....)

"Mom, I want some too!!!" <_<<_<

"Me too" (usually one or two of the four kids bug me for seconds or thirds!)

Meanwhile, whatever I am cooking is starting to boil over, :o race over to the stove, touch my utensils or pots without washing my hands first...... :unsure:

Go from there straight to my food, forgetting that I haven't washed my hands from the last time I touched the regular bread..... :huh:

You get the idea...... :blink:

I am not saying that happens daily, but I can honestly say that some days are just like that..... :(

Karen

Guest Viola
Guest Viola
Posted

I know how you do that Karen ... I've done that by having the phone ring in the middle of things.

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

That reminds me of something else that happens quite often:

Scenario:

I am preparing my dinner while the kids are eating theirs.... My hands are full of some goop or another, and.....

Phone rings....... :angry:

Oldest daughter Eileen answers it as it is right next to the kitchen table... only problem is: She is eating a donut or piece of cake or toast with butter or something along those lines..... <_<

Here Mom, it's for you..... <_<:angry:

Voila, glutened phone that I am now talking on while I finish preparing my dinner....

Karen

KaitiUSA Enthusiast
KaitiUSA
Posted

Karen

Maybe that is the way you are getting gluten into your system? Has the totals got any lower since when you were first diagnosed? How long have you been gluten free?

I know how rushing to do stuff can be....maybe you could wear disposable gloves and then just take them off when you make your stuff and just put on a new pair when it's time to do your families food....just a thought I don't know if that would work...I don't have kids so I don't know how that goes yet.

Carriefaith Enthusiast
Carriefaith
Posted

Thanks Karen, I feel better...

I really hope that you are feeling better soon.

Maybe it was just a combination of gluten contaminations that has been keeping you ill. I have a feeling that is was those chips keeping me sick. I mean chronic diarreah usually doesn't just go away for no reason.

celiac3270 Collaborator
celiac3270
Posted

Yes :), this too shall pass.

Yep...that can be problematic. There's a list of contamination problems at Delphi, linked Open Original Shared Link And the telephone is on here....also the keyboard of your computer. Then there are a lot of obvious ones: the silver drawer, putting gluten-free food on the contaminated counter, etc. This might help? And see if your family can get involved, knowing that if they cooperate, their mommy will be a lot happier and won't have to make as many bathroom stops :). And if you have one of those days (described above with the bread), tell them to ask daddy to help them with the bread :lol:

Once again, I hope you can get your health on track :(

-celiac3270

Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

Hi celiac3270!

Yep, all those are possibilities, except the silverware drawer - I'm fanatical about that, it's cleaned almost every day! :P

When we have dinner, 9 times out of 10 Terry isn't home yet - he usually gets home around 7 - 7:30 p.m. - and I don't have a hope in heck of getting the kids to wait that long!!! ;) It sure would make my life easier though, that's for sure! :D

The keyboard is another possible problem. Our computer is central in our house (in our living room) and in the span of one hour, 12 hands (6 people x 2 hands each) can touch the keyboard at any given time..... especially little hands that have just been munching on something..... :P So that is definitely a possibility.

I still can't understand though how such minute possibilities of contamination can have my tTg numbers still so sky high...... :huh:

Karen

Guest Viola
Guest Viola
Posted

Perhaps all the tiny contaminations just hasn't allowed them to come down as they should. Once they are down, they likely won't climb that high again. Hopefully :o

Guest BellyTimber
Guest BellyTimber
Posted

Karen, hoping it all works out well for you.

BTW what does "tTg" stand for? Should I be asking to have mine checked?

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):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,330
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.