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

Help please!


Tash

Recommended Posts

Tash Newbie

Hi, 

Would really appreciate any advice - 

I've just received a negative blood test for celiac.  I was actually hoping that it would have come up positive as then I'd have an explanation for all my problems. 

For 2 + years I've struggled with bloating and tiredness.  It's now reached the point that I bloat even after water.  Multiple blood food intolerance tests have shown intolerances to gluten, dairy and a range of other foods that I now avoid.  But bloating continues unfortunately.  I'm a personal trainer but don't have the energy to train myself, and have had to cancel work recently as I'm just so tired and feel really heavy.  I initially got a anaemic blood test showing positive (two weeks ago with a private GP), but now with a new GP (NHS) the result is showing that my levels are fine.  The only result they have flagged up is that my folic acid is quite high and I should stop taking any supplements.  I don't understand how in one week my iron could go from 6.0 to fine in one week, after taking just 5 days of Feroglobin.  

About a month ago, prior to the iron test, I had burning skin on my back and face but no blisters.  I initially thought I had slipped a disc as the pain was that bad, but my physio couldn't see anything wrong. This burning comes and goes now, but I have a daily numbness and tingling in my face, hands and feet.  

I have arthritis in my hip and have always managed that (I'm 29 yrs old), but now my muscles and joints hurt all the time; like I've done a heavy workout every day, but I haven't! 

Before the blood test my GP advised me to eat gluten and I managed 5 days of gluten with every meal.  She told me 2 weeks worth but I honestly felt like I had flu (sore throat, headache) and couldn't manage it without sacrificing all of my work.  

What's my next step?? I'm scared that my GP is just going to say that nothing is wrong with me.  Do I push for another celiac test? Do I explore bacterial infections? I shouldn't have to feel like the forever! 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
36 minutes ago, Tash said:

Hi, 

Would really appreciate any advice - 

I've just received a negative blood test for celiac.  I was actually hoping that it would have come up positive as then I'd have an explanation for all my problems. 

For 2 + years I've struggled with bloating and tiredness.  It's now reached the point that I bloat even after water.  Multiple blood food intolerance tests have shown intolerances to gluten, dairy and a range of other foods that I now avoid.  But bloating continues unfortunately.  I'm a personal trainer but don't have the energy to train myself, and have had to cancel work recently as I'm just so tired and feel really heavy.  I initially got a anaemic blood test showing positive (two weeks ago with a private GP), but now with a new GP (NHS) the result is showing that my levels are fine.  The only result they have flagged up is that my folic acid is quite high and I should stop taking any supplements.  I don't understand how in one week my iron could go from 6.0 to fine in one week, after taking just 5 days of Feroglobin.  

About a month ago, prior to the iron test, I had burning skin on my back and face but no blisters.  I initially thought I had slipped a disc as the pain was that bad, but my physio couldn't see anything wrong. This burning comes and goes now, but I have a daily numbness and tingling in my face, hands and feet.  

I have arthritis in my hip and have always managed that (I'm 29 yrs old), but now my muscles and joints hurt all the time; like I've done a heavy workout every day, but I haven't! 

Before the blood test my GP advised me to eat gluten and I managed 5 days of gluten with every meal.  She told me 2 weeks worth but I honestly felt like I had flu (sore throat, headache) and couldn't manage it without sacrificing all of my work.  

What's my next step?? I'm scared that my GP is just going to say that nothing is wrong with me.  Do I push for another celiac test? Do I explore bacterial infections? I shouldn't have to feel like the forever! 

OK were you eating gluten daily 12 weeks prior to the test? You have to be eating it daily in something we call a gluten challenge for the test to work, even then some people it does not show up on and have to get the endoscope and biopsy which might still miss it.
Open Original Shared Link
The burning skins, numbness, tingling....this is magnesium and b-vitamin deficiency which is common with this disease. If you do not have constipation I am going to recommend Doctors Best Magnesium in the powder form in a drink dose like it says. B-vitamins, you need the whole complex, Liquid Health Stress & Energy and Neurological Support tbsp each 3 times a day in a drink. These should help with symptoms for now.

Keep pushing for test in the mean time, I wish you luck with finding the issues. Also start keeping a food diary for now, show this to your doctor, should help explain symptoms and track down any other issues or sensitivities. Open Original Shared Link

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. - kpf posted a topic in Introduce Yourself / Share Stuff
      0

      Vegetarians and vegans with celiac disease

    2. - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    3. - Trish G posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Fiber Supplement

    4. - kpf replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,335
    • Most Online (within 30 mins)
      7,748

    Kathleen Groner
    Newest Member
    Kathleen Groner
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • kpf
      I am wondering if there are any vegetarians or vegans on this forum. I’ve been vegan for 15+ years and am just finding out I likely have celiac disease (blood panel done, need biopsy). My favorite foods—outside of vegetables, fruits, nuts, seeds—I will likely have to give up. Anyone else? 
    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
×
×
  • 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.