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
mandapandapoo
Posted

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
GottaSki
Posted

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
mandapandapoo
Posted
  • Author

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
GottaSki
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,555
    • Most Online (within 30 mins)
      7,748
    Laura65
    Newest Member
    Laura65
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.