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 Some Support?

HumanDecency

Recommended Posts

HumanDecency Contributor
HumanDecency
Posted

Hey Celiac team,

 

I have mostly been a lurker, as of late, as I begin to deal with this illness but I've run into a few hiccups and I can't seem to find any answers. I have been (what I think to be) gluten free for the past 2 months now. At first there was a lot of improvement. Then I started to see other side effects (which my doctors thinks are unrelated to Celiac disease). 

First my neck muscles were getting really tight and this would lead to headaches. I could have attributed this to posture and other ergonomic matters but I tried to rule all causes out and really couldn't come up with anything.

 

Then I started getting other symptoms back... like bloating, gas and the worst one - heartburn and a pain in my chest. Sometimes I will wake up in the middle of the night and my arms will hurt with shooting pain and numbness. My heart will be racing. Say 125 beats per minute at rest. This worries the hell out of me so I started taking my blood pressure and my diastolic would shoot up to 90-100 during this time before settling back down. Well, of course I went to the doctor for this but it seems inconclusive. I was having heart attack symptoms last night and was extremely worried. I rushed to the ER for a battery of tests and my heart came back mostly okay. So something else is causing this and I have no idea what. My doctors aren't really giving me any specifics or how to handle this. I can't get in to see my primary care physician very often as he is new and my old one left. My specialist just wants me to go gluten free for 6 months and that was his only advice. The ER just wants me to keep coming back if I have these problems but that is getting expensive and nothing is being solved. 

 

I am trying to narrow down my diet but I don't know where to begin with this elimination diet. Has anyone had great results with this and how did they achieve it?

 

Right now I am just scared to live my life because I don't want to end up back in the ER, but I have no idea what I am doing wrong. I assume it's probably another food allergy, or could it just be a part of the healing? Anyone else going through/went through anything similar?

 

Your celiac pal,

Jesse

 

 

 

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

Celiac.com Sponsor (A8-M):


GlutenStinks15 Explorer
GlutenStinks15
Posted

I'm sorry I don't have much to offer you. I was diagnosed about two months ago and I haven't had the same symptoms, but my doctor also doesn't think I've had it for very long.

 

The best advice I can think to give you is weed things out slowly and see what your reactions are. I do know that oftentimes people are ultra sensitive to lactose and red wine vinegars when they are first diagnosed - are these currently in your diet? Could there have been a chance of cross-contamination at the times you got the headaches and the other symptoms?

 

Maybe you should also find a different primary care - one who you don't have to wait as long to see.

 

Sorry, I hope this helps even a little bit.

HumanDecency Contributor
HumanDecency
Posted
  • Author

Thanks for the response. I wish you well, as well. 

 

Cross contamination is always possible, it seems but I have been doing my best. I've cut out lactose (on my own) and don't use red wine vinegars. Although I got a little frisky and did cook a lot of veggies with a "gluten free" Indian sauce. 

 

I'm with you on the finding a different provider. I tried to call around today with no luck, but I am going to call around tomorrow as well. Hopefully I will be able to find someone that at least pretends to listen/care.

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

I am wondering about cross contamination and/or other food intolerances emerging.

I did do an elimination diet about 4 months in, and the last 5 months have been amazing. Normally I'd recommend it, but with your symptoms it seems sensible to get checked out too.

A food diary, listing what you eat and symptoms can help, maybe along with an elimination.

If you haven't already, check out newbie 101 in the coping with section.

Welcome to the board, keep asking questions. It can be quite a puzzle, but there is a lot of experience here :)

HumanDecency Contributor
HumanDecency
Posted
  • Author

Thanks. I'm definitely going both routes. The getting checked out part is just costing me an arm and a leg even with insurance. I think I am more worried about the uncertainty. If I am just healing... then I'll plow through the suffering but events like last night's ER trip really rattle me. I don't like not knowing what is going on with my body. 

 

I actually started my food diary this morning. Is there anywhere on the site where people share their diaries? It could be useful for tips on how to eat and to help nit-pick the choices of others to maybe help them out on the way.

 

This forum definitely helps... Just sometimes good to get things off the chest. Especially this pain. 

1desperateladysaved Proficient
1desperateladysaved
Posted

I had heart problems related (I think) to mal-nutrition.  Namely these were high blood pressure 185/115 and my orthostatic blood pressure dive bombed when I stood up and stayed down.  These resolved with supplements that my chiropractor tested for and provided me with.  Make sure to get quality supplements and hopefully some form of nutrient testing, so that you know what you need.  One would take supplements, but you need help also.  I hope you will find some helpful help!

 

I hope you get all of these struggles off your chest!

 

Get well.

 

Diana

GFinDC Veteran
GFinDC
Posted

Hi HD,

 

There is no food diary sharing thread that I know of.  We do have threads where people talk about what they ate for breakfast, lunch and dinner.  Not really a diary though.  The value is probably not great in doing it anyway.  The foods that I react to can be totally different foods from what you might react to.  So, not really very useful.  Some members signatures list their food intolerances in their signatures, so that can give you idea of some possibilities.

 

 If you think you are reacting to a food, and don't know which one (or two), try simplifying your diet.  Cut down the number of foods you eat to  bare minimum for a couple weeks.  Don't forget that vitamin pills medicines, drinks etc all count as possible problems.  Eating in restraunts should be out for now until you figure out why you are sick.  The fewer chances of CC the better while you are healing.  You are having some what serious sounding reactions.   You could be dealing with food allergies as well as food intolerances.  Your doctor can arrange for food allergy testing for you.  If it is a food allergy an aniti-histamine should help with symptoms.

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

is it possible you are getting cc'd enough to be going through withdrawal again?  i know that when i first went gluten free, i went through it, i had heart palpitations also night sweats.  and i cc'd myself months later with things that i made and froze early on before i got 'better' at fixing food for myself.  i didn't think i could be that sensitive in the beginning, i thought i was doing great until i ate things out of the freezer that were lolz SUB-PAR!  when i stopped being glutened by my hair care products, etc., it was easier to notice when i got hit.  does that make any sense to you?  i felt better, generally, so feeling worse was easy to identify???  yes, food journal is always a great idea when you're trying to figure things out.

 

if you are having trouble with your heart, though, that's nothing to fool with :(  that's scary....

pricklypear1971 Community Regular
pricklypear1971
Posted

It seems to be normal for strange things to happen after you go gluten-free. I wish there was a name for it - but we can just call it "weird stuff". No one knows why, either - perhaps it's the body's way of communicating? Removing a stressor (gluten) allows the body to start thinking about something else?

Aside from the importance of a food diary, and double checking your home for other sources of gluten (toaster, utensils, personal products) - that will keep you busy...I agree you need to get nutrient testing done. What are you deficient in? Supplement.

Additionally, you could have another condition that us more metabolic/endocrinological that can cause racing pulse, muscle cramps, heart palps, etc. I would ask for a thorough thyroid screen with your new doctor - tsh, free t3/t4, reverse t3, tpo antibodies, graves antibodies. Your adrenals being out if whack can cause heart palps, racing pulse. Thyroid and adrenal issues are common in the gluten challenged. I can tell you from personal experience that my thyroid causes me more scary symptoms than I ever imagined - heart palps, exhaustion...glucose swings....and getting the thyroid med adjusted correctly makes ALL the difference.

Could also be hormonal. Again, going gluten-free seems to upset the apple cart, and your body needs to find a new equilibrium. Saliva hormone testing could be a good idea, in conjunction with serum hormone testing. There are several reputable companies that let your order serum and saliva tests without a doctor. Figuring out which ones to order, though, can be challenging.

HumanDecency Contributor
HumanDecency
Posted
  • Author

Thanks everyone. I called and scheduled with a new doctor. Hopefully he will have some insight on Monday. Now I just have to wait out the weekend! My heart seems to be okay, it's more just "strange" symptoms that I can't really explain. I have been reading the forum like crazy and I think it might have had something to do with cauliflower. I ate a lot of it for dinner on the night before my attack. I'm working on the elimination diet. I still have strange aches and pains... I just hope they stay minimal until I can figure out if I need medication, supplements or just to grin and deal with it.

 

I'll also ask about all the tests.

 

Hope everyone is doing well. 

GlutenStinks15 Explorer
GlutenStinks15
Posted

Please keep us posted - I hope the new doctor has more insight for you and is at least more responsive.

 

I should also mention that I have Hypothyroid disease as well - have had that for 16 years  - and it often gives me palpitations - sometimes to the point where I feel like my heart is going beat right out of my chest. So as pricklypear mentioned, make sure the new doc runs a FULL thyroid panel on you, not just for the TSH (thyroid stimulating hormone), you want a full panel.

 

Good luck!

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
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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)

  • 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.