Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Confussed Can You Help Please?

poppet

By poppet
in Coping with Celiac Disease

Recommended Posts

poppet Rookie
poppet
Posted

Hello i am poppet a mum to 3 great kids, i have ulcerative colitis and maybe wheat/gluten allergy, i have been having a few problems with things and thought i would drop in to see if you could help me please, this is a long one so be ready...

I have been tested in march for wheat/gluten allergy the specialist who deals with my ulcerative colitis suggested i go wheat/gluten free while i see her next in november...

Fine i said i did as she said and after 2 days i felt miles better, a bit more energy not crampy all the time, go to toilet 3-4 times a day instead of 25 times, i lost 3 and half stone since i have been on it, trouble is it is very expensive...

One bread loaf cost £3.33, ok its a small price to pay for health and worth it but it is the not knowing...

I am anemic so i have to take iron, i know when i am low on iron and start taking it again, so i start taking it last week what normally gives me constipation has given me the opposite..

I phone up the chemist and ask them if they are what free she didnt know gave the number to the manufactuer so i phoned them and they do contain wheat i phoned the chemist back to tell them as they could give some one with a servere reaction anaphalactic shock, again she didnt seem interested...

I phoned my gp and told them they contain wheat, she suggested i phoned up the specialist and ask for my results to be faxed to the gp, the speacilsts secretary couldnt do this i have to wait while november, i mean come on these are my results why cant i have them???

I am so peeved of at the minute, the secretary didnt want to be bothered by me and seemed put out that i phoned up!!!! what a snob i hope she never gets ill, she said all i can say to you is if you have a sandwich you will be ill!!! is she confirming my allergy to wheat or is she safe guarding herself, this is so unreal you have to laugh about it...

So after 7 calls yesterday i am a still none the bloody wiser, and if my gp repeats the test it will come back negative as i have been wheat free for 6 months now!!!

Also does anyone know if cooking oil, has wheat in it, i used to be ok with chips but now i get all crampy if i eat them but if i mash them i am ok, is it the oil?..

So many questions with no one to help me, hope you can love poppet x

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

I would continue to work on getting those results. You may have to be persistent and you may have to deal with a bad attitude, but keep on it. It's true that being gluten-free for so long will turn up positive. (The tests are looking to a reaction to gluten; if you haven't had any gluten, you can't have had a reaction to it.)

The chips could be fried in the same oil as something that is breaded - if that is the case, they will be contaminated and make you sick.

As for the cost, it seems pretty universal that substitutions for gluten-free food are expensive, because we're a niche market, and there isn't enough demand to keep prices low. It means that it'll be cheaper to do what you can to find foods that are naturally gluten free. This, in turn, may mean more cooking from scratch, but that too is healthier. (Also, and one of our UK members will have to check up on me here, I think that you can get a prescription from the doctor to cover the added cost of specialty gluten free foods.)

Welcome to the board! You'll find a lot of great advice! Most of us are in the US, but there're are a number in the UK who can give you some region-specific advice.

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 Bebygirl01's topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...
    2. Bebygirl01
      - Bebygirl01 posted a topic in Related Issues & Disorders
      1

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...
    3. Scott Adams
      - Scott Adams replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than ...
    4. knitty kitty
      - knitty kitty replied to Dawn Meyers's topic in Related Issues & Disorders
      21

      Vaccines

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1. Thiamine is needed in the immune response and production of antibodies. Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease. Thiamine can be destroyed by sulfide...
    5. knitty kitty
      - knitty kitty replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      8

      Increasing symptoms after going gluten free

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products. We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life. Sudden weight gain (or weight...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,008
    • Most Online (within 30 mins)
      7,748
    Kateobrien1313
    Newest Member
    Kateobrien1313
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found in wheat, barley and rye. These other cereal grain proteins have their own names (avenin, secalinin, zein, etc). Unfortunately, confusion has been created in popular and pseudo scientific literature by the informal use of the term "gluten" when talking about the proteins found in these other cereal grains such that you sometimes read about "corn gluten", "oat gluten", "rice gluten", etc. But these are actually misnomers, with "gluten" having been added on as an informal appendage to the actual protein names. Having said that, the protein structures of these other cereal grains is close enough to gluten that, for some people, they can cause a celiac type reaction. But this is not true for most celiacs and those who fall into the NCGS category. Apparently, it is true for you. This whole idea that cereal grains are bad for all of us has been popularized by books such as Dangerous Grains for years but it is not a widely accepted idea in the scientific community.
    • Bebygirl01
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By Bebygirl01 · Posted

      On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those on a 'traditional' gluten free diet , who are also still sick and struggling, are you also reacting to these other types of gluten as listed below? NOTE:  The new movement if you want to call it that, is now called 'grain free' and that is the true definition of gluten free. I no longer suffer with ataxia, confusion, anxiety, depression, OCD, Insomnia, ADD, acid reflux, dermatitis herpetiformis, migraines, headaches, and weight issues all due to going 'grain free'. I hope to reach as many of you out there that are still struggling and unaware of what might be setting you off such as my most recent glutening was from a vegan supplement that contained 'magnesium sterate' and 'glucose syrup' both of which are from Zien (zane) gluten at 55%. I was covered in sores that were bleeding, I was seeing squigly lines when I was trying to drive, had acid reflux, insomnia, and nightmares all from the gluten in Corn. Here are the other types of glutens that Celiacs and Gluten Intolerant people also react to: Wheat -Alpha Gliadin Gluten- 69% Rye - Secalinin gluten-30-50% Oats-Avenin gluten -16% Barley-Hordein Gluten -46-52% Millet-Panicin Gluten-40% Corn-Zien Gluten -55% Rice-Orzenin Gluten-5% Sorghum-Kafirin gluten-52% and Teff-Penniseiten Gluten 11%.
    • Scott Adams
      Vaccines

      By Scott Adams · Posted

      I just want to mention again that IF thimerosal is used in a flu vaccine the amount of ethylmercury in a single vaccine dose would be extremely small, typically around 25 micrograms (µg) or less. For context, this is much lower than the levels of methylmercury found in some seafood. Ethylmercury is metabolized and excreted from the body much faster than methylmercury. Its half-life in the blood is about 7 days, compared to methylmercury, which can persist for months. The dose of ethylmercury in vaccines is far below the threshold known to cause toxicity so would not require chelation.
    • knitty kitty
      Vaccines

      By knitty kitty · Posted

      If you have poor reactions to vaccines, preservatives, sugar alcohols and metals, you may be deficient in Thiamine Vitamin B1.  Thiamine is needed in the immune response and production of antibodies.  Thiamine can be depleted by vaccines if you are already low to begin with due to the Malabsorption of Celiac Disease.  Thiamine can be destroyed by sulfide preservatives in vaccines, which can result in the body's poor response to vaccines.  Thiamine also chelates metals which allows those metals to be removed in the feces.  Chelation removes thiamine from the body, resulting in a state of thiamine deficiency.  Sugar alcohols need to be processed through the liver using thiamine.  Again, if you're low in thiamine as many Celiac are because of the Malabsorption of celiac disease, vaccines can be a tipping point, resulting in a thiamine deficient state. High doses of Thiamine required to correct thiamine deficiency states are safe and nontoxic.  Thiamine has no toxicity level.  Thiamine and the other B vitamins need to be taken together because they interact together to sustain health.   References: https://pubmed.ncbi.nlm.nih.gov/25542071/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • knitty kitty
      Increasing symptoms after going gluten free

      By knitty kitty · Posted

      @Pasballard, Keep in mind those gluten free processed snacks are not required to have vitamins and minerals added to them to replace vitamins lost in processing like gluten containing products.   We need the eight essential B vitamins to turn those carbs into energy to fuel our bodies and make enzymes that sustain life.  Sudden weight gain (or weight loss) can be symptomatic of Thiamine Vitamin B1 deficiency.  Thiamine is the B vitamin with the shortest storage time, and so  thiamine deficiency shows up first with vague symptoms like weight gain or loss, fatigue, not sleeping well, achy or cramping muscles, digestive issues and headaches.   Taking vitamin and mineral supplements helps boost your body's ability to absorb these nutrients which keeps our bodies healthy.  B Complex vitamins and Vitamin D (which regulates inflammation) are usually low in people with Celiac disease.  Talk to your doctor and nutritionist about supplementing.
×
×
  • Create New...