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

Recommended Posts

poppet Rookie

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,468
    • Most Online (within 30 mins)
      7,748

    Muna
    Newest Member
    Muna
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Thanks for sharing this info! Frustrating to see companies who haven't used wheat as an ingredient start to do so! https://blistex.com/product/five-star-lip-protection/
    • Emily P.
      As of July 2025, Blistex is no longer gluten free for their five star protection lip balm The last ingredient is WHEAT! From Blistex' website, ingredient list for 5 Star Protection;: "Inactive Ingredients: bis-diglyceryl polyacyladipate-2, bis-stearyl dimethicone, butyloctyl salicylate, C12-15 alkyl benzoate, calendula officinalis extract, caprylic/capric triglyceride, carthamus tinctorius (safflower) seed oil, cetyl dimethicone, citric acid, euphorbia cerifera (candelilla) wax, flavor, microcrystalline wax, myristyl myristate, octyldodecanol, oryzanol, ozokerite, panthenol, phenoxyethanol, sorbic acid, stearyl behenate, sucralose, tetrahexyldecyl ascorbate, tocopheryl acetate, triticum vulgare (wheat) germ oil"
    • knitty kitty
      I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.   I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile. Here's the tests you can get for Celiac antibodies...  
    • knitty kitty
      @Ginger38, I'm with you!   I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.   Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!   I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication. Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!
    • Jmartes71
      Thankyou I will be seeing my new primary this coming Monday and will ask.I did ask about some other blood test to look for that I saw on this website.I pushed the second ANA panel two months ago thinking it would show but found out it doesn't.I don't have lupus which seems what the ANA panel seems to only look for.I have come to the conclusion that doctors are like hair people meaning all hair places know how to cut hair and style but not all know how to grow hair.I was given tramadel for nearly 20 years to push through. I literally can't no more and stopped taking tramadel since I was swelling slowly in the belly.I will diffently show new primary this website and hopefully he will help.Its so hard because im falling apart with my eye, skin and read every label and stay away from what Im not supposed to.I had SIBO test done and it died on me and didn't complete all 8 breathes just the 5.I spoke to np and was finally validated by word of mouth.Cone to find out I have to repeat again.I went to a reputable hospital to be let down.I have to redo breath test but want to do at hospital instead of at home so no issues.Its not pleasant drinking that glucose stuff and not getting a direct answer. I live in Northern Cali.What recommended gi would know about celiac  disease, really know because I thought I found one but didn't. I don't want to digest any wheat, dairy, peanuts, rye, barely, eggs,garlic, walnuts because I get sick.When i showed the reputable hospital my past food allergies i was told that test is old.My thoughts were i was made in 1971 and its still avtive with diagestive issues. 
×
×
  • Create New...