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

Need Advice For My Next Step

Sparky123

By Sparky123
in Coping with Celiac Disease

Recommended Posts

Sparky123 Newbie
Sparky123
Posted

Hi guys,

I posted recently about how I was struggling to get better and how lots of different foods were making me ill. Well unfortunately I'm still struggling and need some advice over what to do next.

My background: recently discovered I have a gluten intolerance after being housebound for 2+ years. Had severe fatigue, anxiety, hot flushes during that time. Went gluten free and started to feel better instantly. (Had a celiac blood test which came back negative). First month or so I started my energy started to pick up, but now I'm almost 4 months gluten free and feel awful.

The rest of my family have gone gluten free, and we've overhauled the kitchen to reduce risk of CC. I only eat very plain basic food (porridge with water, plain tuna salad, rice and chicken/salmon). Recently I've had bad reactions (constipation, mild diarrhea, anxiety, fatigue, etc) to so many different foods..

gluten-free bread, Bacon, fruit, tomatoes, cheese, nuts, cereal bars, chocolate, butter.. I could I go on.

Also last week I went I my doctor and he gave me some Pancreatin to see if it helped things. It didn't agree with me at all, competely stopped my bowel movements for a week, and It made me very groggy and unwell.

Sorry this is so long! But I need some advice over what to do next. What tests should I be asking from my doctor? Vitamin levels? Thyroid? I'm getting so frustrated.

Sparky

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

What kind of porridge? I can not tolerate even gluten-free certified oats or quinoa.

Have you read the threads on mast cell activation syndrome? Worth reading.

Sparky123 Newbie
Sparky123
Posted
  • Author

Gluten free oats. Not sure what else id be able to have for breakfast otherwise. What do you have?

I've never had a bad reaction to the porridge, but I'll probably cut it out just to be sure.

cyclinglady Grand Master
cyclinglady
Posted

Rice porridge, Rice or Corn Chex cold cereal, leftover rice or like, today.....canned salmon on fresh greens!  Yes, for breakfast!  Ate a grapefruit and had coffee.  Then snacked on some sunflower seeds.  

 

I'm allergic to eggs, so they are out for a protein source.  So, I typically have leftover meat (i.e. I cook a bunch of chicken breasts and then freeze them in individual packs).  I can't have milk protein, but  I tolerate soy products very well.  I also try to eat some veggies.  

 

You have to think outside-of-box for breakfast!

cyclinglady Grand Master
cyclinglady
Posted

So often food intolerances or allergies don't cause severe and swift reactions.  Often they are delayed up to 24 hours or longer.  Reactions can vary with the food.  For example, oats and quinoa reactions follow my first gluten reaction of food sitting in my stomach and pain or tweaking in that area.  Later I get muscle aches, fatigue, etc.   Milk,  though will cause my nose to start running/congesting within five minutes of ingesting.  Later, I'll get gas, abdominal pain and cramping and then constipation.  Garlic will cause mouth tingling and then intestinal symptoms all the way to diarrhea and trigger roscea symptoms.

 

Best to keep a food and symptom journal to help you determine your intolerances.  Not all folks have issues with other foods -- just us lucky ones!   :unsure:

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I'm not one for solid food in the morning - I drink a protein shake every morning (Whey Protein).  But my mother (also a Celiac) loves buckwheat cereal.  (don't let the name fool you... buckwheat is in no way related to wheat... it's actually not even a grain, but a fruit)

GFinDC Veteran
GFinDC
Posted

There are a few threads (make that a lot) of threads on what to eat.  You don't have to eat the usual breakfast type things in the morning.  Try eating dinner or lunch in the morning instead.

 

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

What Did You Have For Lunch Today?
https://www.celiac.com/forums/topic/87765-what-did-you-have-for-lunch-today/

What's for dinner tonight chat?
https://www.celiac.com/forums/topic/75238-what-are-you-cooking-tonight/
 

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

Celiac.com Sponsor (A8-M):


MGR Apprentice
MGR
Posted

Also some types of bacon, or cooked ham sometimes have hidden gluten among their ingredients- you have to try to get the most natural kinds of these. For breakfast I tend to have fruit and a bowl of natural yoghourt with maple syrup, coffee or tea..

frieze Community Regular
frieze
Posted

hmm....steak and eggs with homefries are gluten free....just sayin'.

Sparky123 Newbie
Sparky123
Posted
  • Author

Cheers for all the food ideas. I'll be trying loads of stuff hopefully in the future once I can tolerate them.

Surely though its not right that I had a bad reaction to taking Digestive Enzymes (Pancreatin)? I'm sure there is something else going on. Just can't figure out what.

cyclinglady Grand Master
cyclinglady
Posted

Sure , you can react to the digestive enzymes. You can react to anything!

  • 2 weeks later...
Sparky123 Newbie
Sparky123
Posted
  • Author

Well well well! Think I'm on the right track now, thought I would post what's happening.

As some of you mentioned, pretty much all of the food I've had bad reactions to are high in histamine. Thank you those of you who told me to look into to (aswell as the PM) I would never have found it out otherwise.

So I'm now avoiding high histamine foods, eating stuff that's only got low levels of it, as well as adding in some anti-histamines into my diet. I'm sure this is what's been troubling me. I've only had trouble with high histamine foods AFTER going gluten free and starting to make a recovery. Do you guys think this is happening possibly because I was unwell for a long time before being diagnosed (2 years) so now my gut is a bit damaged and is being hypersensitive to foods? I guess I'll have to just wait and see how things go.

dilettantesteph Collaborator
dilettantesteph
Posted

I agree with the porriage as the first thing to try.  Also the bacon.  If you try those things and still have problems I have suggestion for where to go next.  Look at this paper for people with continuing symptoms on the gluten-free diet and try their approach.  Open Original Shared Link

 

My son and I seem to need to take it one step further and avoid rice too.

 

I hope that you feel better soon.

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
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.