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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - glucel replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

    2. - trents replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

    3. - glucel replied to Bindi's topic in Super Sensitive People
      36

      Refractory or super sensitive?

    4. - Scott Adams replied to Tonya Kane's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters and gluten

    5. - trents replied to aperlo34's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      2 months in... struggling with symptoms


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,938
    • Most Online (within 30 mins)
      7,748

    Songbird64
    Newest Member
    Songbird64
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • glucel
      I don't react the same way to all of them but do react badly to many of them where others may not. I also have a touch of hypochondria so when the labs come back too high or makes me anxious. I am dismayed but not really surprised that I may be in the small group of people to suffer a particular side effect. I was originally on warfirin. I think that was the one where I had trouble with vitamin k numbers and or was anemic with low hemoglobin, red blood cells etc.  My blood pressure drops to very low numbers after taking something as simple as turmeric for a few weeks. My diastolic had touched 50 one day before I finally figured out that the herb was the problem. No intention to go for 40 so never looked back. I wanted to try benfothiamine but one of the listed side effects is bradycardia and other stuff that I am not going to challenge esp since I have had and still have to a lesser degree heart rhythm problems. 
    • trents
      What do you mean when you say, "blood thinners are all the same to me"? Do you mean you react negatively in the same way to all of them? Otherwise, they are not all the same. They work in different ways. Aspirin causes the platelets to be less sticky. Warfarin and related meds work by reducing the production of platelets. You might talk to your doctor about alternatives to aspirin. 
    • glucel
      That's interesting because I think that the lousy 81 mg irritates my gut. I'm sensitive to drugs in general and blood thinners are all the same to me so aspirin necessary evil. As they say, better to be a live chicken than a dead duck. 
    • Scott Adams
      I've been using a Brita water filter for well over a decade without any issues. I seriously doubt that these water filter companies would use glues that would end up in your water, as that would be counter to what they are trying to do, which is to purify tap water. Please provide some specific evidence to back this claim up, as such speculation can cause undo fear, as well as reputational damage to these companies. Don't get me wrong here, I am not saying that this isn't possible, but is very unlikely.
    • trents
      Welcome to the forum, @aperlo34! You said you had a colonoscopy "ordered" in July? Has that procedure happened yet? A colonoscopy cannot be used to diagnose celiac disease so I assume the order for the colonoscopy is to check for something else. The procedure used to diagnose celiac disease is the endoscopy. So, I assume you have had blood antibody testing done and it was positive and then you had an endoscopy/biopsy done to confirm those results? That is the normal process for diagnosing celiac disease. Have your constipation/irregularity problems improved since going gluten free? Some of the continuing symptoms you describe would seem to fall into the category of neurological effects (muscle twitching, shakiness, weakness and headaches) and others such as dry eyes, fatigue, stiffness and joint aches sound like they could be autoimmune effects. Are you taking any high potency to vitamin and mineral supplements? Celiac disease often/typically results in vitamin and mineral deficiencies due to malabsorption from the damage to the small bowel lining it causes. I note that your vitamin D levels are barely within normal range and the only B vitamin testes is B12. The B vitamins and D3 are very important to neurological health. And the several B vitamins all work together synergistically. So, they all need to be up to snuff, not just B12. I would suggest starting on D3 supplementation in the amount of about 5000 IU daily and also a high potency B-complex. Costco's Nature Made and Kirkland brand products are good quality and priced well and usually gluten free (and will state so on the packaging). Realize also that gluten free flours and facsimile foods are not fortified as are their FDA mandated gluten equivalents. So, when you cut out gluten, you cut out a significant source of vitamins. One thing to be aware of is that Celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster. That is, when you have one you there is a good chance you will develop others in time. I don't wish to alarm you because I know you have said you already struggle with heath anxiety but many of your symptoms make me think you have some other autoimmune condition going on in addition to celiac disease. Have you been checked for Sjogren's or lupus for instance?  Finally, I am including an article that is helpful to newly diagnosed celiacs in getting a head start on the learning curve of eating gluten free:   
×
×
  • Create New...