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

Ugg, Hit The Dreaded "worse Before Better" Thing

dlp252

By dlp252
in Coping with Celiac Disease

Recommended Posts

dlp252 Apprentice
dlp252
Posted

I was hoping I would skip this part, lol. I've been seeing so many small improvements since going gluten/casein free, but for the past few days I have been very off-balance and feeling nauseated. I'm also having some problems with low blood pressure which produces a different kind of feeling--more like the blood is draining from my head type of thing.

I saw my regular GP yesterday, who basically just took my pulse and said the off-balance/nausea was probably related to inner ear/sinus problems. She prescribed something similar to dramamine for that and said I could take dramamine or the prescription. I had some Bonine (similar to dramamine) at home so took one of those yesterday afternoon, but ugh, still feeling nausea. I have an appointment with an ENT next week. (For the record, I don't get motion sickness usually or easily...can take the wildest of ocean cruises, air planes, car rides etc. with no ill affect--hard to believing sitting at my desk would produce motion sickness, but I'm no doctor, lol.)

She also said to monitor my blood pressure and to not move suddenly, get up quickly, and avoid standing or sitting for too long. Um, I'm going to Disneyland in about two weeks...it may involve some standing and sitting, lol. She didn't really say anything about it...course, she didn't have my chart in front of her either which would have shown YEARS of my "normal" BP readings...

I don't think this is related to being glutened although I have eaten out at Carl's Jr. (fries and a low carb burger) ...but then I do that every Saturday and have for months and haven't felt this way--I've even asked the manager if they have dedicated fryers at that location, which he said yes (course I guess I should be wary of the "deer in the headlight" look he gave me as I was asking). I don't feel like I'm coming down with anything either.

It's frustrating!

I guess I'm going to have to go back to bare basics for a while until my system calms down.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
I was hoping I would skip this part, lol. I've been seeing so many small improvements since going gluten/casein free, but for the past few days I have been very off-balance and feeling nauseated. I'm also having some problems with low blood pressure which produces a different kind of feeling--more like the blood is draining from my head type of thing.

I saw my regular GP yesterday, who basically just took my pulse and said the off-balance/nausea was probably related to inner ear/sinus problems. She prescribed something similar to dramamine for that and said I could take dramamine or the prescription. I had some Bonine (similar to dramamine) at home so took one of those yesterday afternoon, but ugh, still feeling nausea. I have an appointment with an ENT next week. (For the record, I don't get motion sickness usually or easily...can take the wildest of ocean cruises, air planes, car rides etc. with no ill affect--hard to believing sitting at my desk would produce motion sickness, but I'm no doctor, lol.)

She also said to monitor my blood pressure and to not move suddenly, get up quickly, and avoid standing or sitting for too long. Um, I'm going to Disneyland in about two weeks...it may involve some standing and sitting, lol. She didn't really say anything about it...course, she didn't have my chart in front of her either which would have shown YEARS of my "normal" BP readings...

I don't think this is related to being glutened although I have eaten out at Carl's Jr. (fries and a low carb burger) ...but then I do that every Saturday and have for months and haven't felt this way--I've even asked the manager if they have dedicated fryers at that location, which he said yes (course I guess I should be wary of the "deer in the headlight" look he gave me as I was asking). I don't feel like I'm coming down with anything either.

It's frustrating!

I guess I'm going to have to go back to bare basics for a while until my system calms down.

The effects you are describing are the same first effects I get from being glutened. Be careful and check your OTC meds for gluten binders. It may well be from the Carl's trip, having worked in the restaurant business for years I will say if they had someone new they may have made a mistake with the fryer, and while these fryers (contrary to popular opinion) are changed daily in most places that doesn't mean an 'accident' didn't happen. Also an employee may have put you burger on a bun and then taken it off. I hope you get some relief soon, if it was gluten it will pass as long as you are not reinjesting. You have checked all your cosmetics, toiletries etc. and changed toasters also, right?

dlp252 Apprentice
dlp252
Posted
  • Author

Thank you! Yes, I have a new toaster oven. I don't use makeup everyday, just on weekends and then use Bare Minerals, except for mascara which is Maybelline and a lip liner which is Mary Kay...hum, maybe I need a new lip liner. I've been using Gluten-Free Sav. soap and alternate their shampoo/conditioner with a huge bottle of Bumble & Bumble that I'm trying to use up. The Bumble & Bumble ingredients look okay, but of I don't know about cross-contamination. I've checked the ingredients on most of the products I use as toiletries, and most look okay. I take Zyrtek, and haven't checked that yet, and I did just start taking it again a week ago. All my vitamins are gluten-free/casein-free and in fact don't contain any of the top 8 allergins now that I think about it. I also don't have the box anymore for the Bonine I took, but I've had the symptoms before yesterday.

I'm thinking it may very well have been the Carl's Jr. Arg...we just have to be such detectives.

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    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.

      @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...
    4. 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...
    5. 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...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • 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?
×
×
  • 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.