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

Please Help!


mandapandapoo

Recommended Posts

mandapandapoo Rookie

Not sure if this is the right place to post this, but I'm go ahead anyway :

 

I used to post in this forum a while back for my mother. She was having chronic severe stomach pain, with chronic diarrhea and some other strange symtoms. Her tests came back negative for celiac, but we tried a gluten free diet anyway. The pain vanished. She's been doing great since. Now, I'm here for me. I've always felt nauseous. I can't remember ever feeling not "sick" . I can't get a GP to take me seriously as I'm 18 years old, and half the time it's blamed on hormones or anxiety. I do have anxiety, but because I feel horrible all the time (a thing that most doctors don't seem to understand) After the gluten free diet helped my mum, I started on it. My appetite increased, but no change in my nausea. Last June, the nausea was so bad, I was at my wits end and didn't want to be here anymore. That seems so silly, but I felt that bad. I lay in my bed for about 1 week dry heaving, barely managing to eat one grape. My mum even threatened to put me in hospital to get a feeding tube. The only thing I remember eating a lot of before this happened was peanut butter, but I don't know if that was a coincidence.  Luckily, my gastroenterologist prescribed me Ondansetron, and that eased it slightly, but didn't take it away.

 

I keep getting this overwhelming sensation that I've missed something, and I don't know what! Food allergies run in my family, so I asked my GP if I could get tested for any food allergies (I get the sensation of a hair in my throat, or a swelling) and he said you can't test for an allergy without knowing what you're allergic to. My cousin got tested for food allergies by skin testing, and he came back allergic to a ton of things, so I don't understand this. Anyway, I'm rambling... does anyone have any ideas what could be wrong with me? If you need more info, I'll answer, thanks for reading :)


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Not sure if this is the right place to post this, but I'm go ahead anyway :

 

I used to post in this forum a while back for my mother. She was having chronic severe stomach pain, with chronic diarrhea and some other strange symtoms. Her tests came back negative for celiac, but we tried a gluten free diet anyway. The pain vanished. She's been doing great since. Now, I'm here for me. I've always felt nauseous. I can't remember ever feeling not "sick" . I can't get a GP to take me seriously as I'm 18 years old, and half the time it's blamed on hormones or anxiety. I do have anxiety, but because I feel horrible all the time (a thing that most doctors don't seem to understand) After the gluten free diet helped my mum, I started on it. My appetite increased, but no change in my nausea. Last June, the nausea was so bad, I was at my wits end and didn't want to be here anymore. That seems so silly, but I felt that bad. I lay in my bed for about 1 week dry heaving, barely managing to eat one grape. My mum even threatened to put me in hospital to get a feeding tube. The only thing I remember eating a lot of before this happened was peanut butter, but I don't know if that was a coincidence.  Luckily, my gastroenterologist prescribed me Ondansetron, and that eased it slightly, but didn't take it away.

 

I keep getting this overwhelming sensation that I've missed something, and I don't know what! Food allergies run in my family, so I asked my GP if I could get tested for any food allergies (I get the sensation of a hair in my throat, or a swelling) and he said you can't test for an allergy without knowing what you're allergic to. My cousin got tested for food allergies by skin testing, and he came back allergic to a ton of things, so I don't understand this. Anyway, I'm rambling... does anyone have any ideas what could be wrong with me? If you need more info, I'll answer, thanks for reading :)

Welcome back!

I remember you and am pleased to hear your mother has improved gluten-free. Since she improved gluten-free and tested negative for celiac disease, she is either non celiac gluten intolerant or celiac (can't remember if she had endoscopic biopsies or just blood work while ingesting gluten).

At any rate - you need to be tested for celiac disease and find a new allergist. Allergy testing is indeed specific to food or environmental items, but it is a simple blood test. Additionally the skin prick tests are fairly simple. Me and my kids have all had them.

A few words of caution....if you are having throat swelling or trouble breathing with unknown cause - you need to carry epi-pens. Your primary can prescribe these while you are trying to find a new allergist.

Hang in there :)

mandapandapoo Rookie

Welcome back!

I remember you and am pleased to hear your mother has improved gluten-free. Since she improved gluten-free and tested negative for celiac disease, she is either non celiac gluten intolerant or celiac (can't remember if she had endoscopic biopsies or just blood work while ingesting gluten).

At any rate - you need to be tested for celiac disease and find a new allergist. Allergy testing is indeed specific to food or environmental items, but it is a simple blood test. Additionally the skin prick tests are fairly simple. Me and my kids have all had them.

A few words of caution....if you are having throat swelling or trouble breathing with unknown cause - you need to carry epi-pens. Your primary can prescribe these while you are trying to find a new allergist.

Hang in there :)

 

Hi again! She just had the blood test, but she is doing so good now!

 

I got tested for celiac too (I forgot to mention that) and everything came back negative. I live in the UK, so I'm not sure if we have allergists here, I've just spoken to my GP about getting food allergy testing, and he seemed a bit clueless. I could speak to my gastro about in, as I've got him again on the 20th of this month.

 

Really?! My GP just implied that I was imagining the whole situation. I went through a phase of getting very breathless, but thought it was my asthma. Could this be an allergic reaction to something?

GottaSki Mentor

Hi again! She just had the blood test, but she is doing so good now!

 

I got tested for celiac too (I forgot to mention that) and everything came back negative. I live in the UK, so I'm not sure if we have allergists here, I've just spoken to my GP about getting food allergy testing, and he seemed a bit clueless. I could speak to my gastro about in, as I've got him again on the 20th of this month.

 

Really?! My GP just implied that I was imagining the whole situation. I went through a phase of getting very breathless, but thought it was my asthma. Could this be an allergic reaction to something?

Unfortunately, many of us received the...it's all in your head, due to hormones, stress, overworked....etc....etc....etc.

If you know your body is not working correctly..don't take that answer...keep looking :)

Archived

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

  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • 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
      @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
      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
      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
      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
×
×
  • 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.