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

Trying To Get Diagnosed During Visit To Belgium - Should I Start Eating Gluten?

naturegirl

Recommended Posts

naturegirl Rookie
naturegirl
Posted

Hello all,

I'm going back to Europe for 3 weeks in a week, including 10 days in Brussels and want to try to get a diagnosis while I am over there (as it is WAY WAY more affordable). I wanted to know if anyone knows of a gastro-enterologist for adults in Brussels (only found dr's in other parts of Belgium or pediatricians in Brussels on the forum). I am not sure that I will be able to get an appointment this late in the day anyway... and I have already emailed a few dr's to try to get an appointment. I should see a gastro-enterologist rather than an allergist, right?

Also, I have been off gluten for 13 months. If I am able to schedule a colonoscopy (plus biopsy?) should I start eating gluten for the 10 days/2 weeks before I have it (or is that too short a time period anyway)? Of course, I really don't want to eat gluten (as it makes me feel terrible, I have no desire to eat it anymore!!!) but I will if I have to do so to get a clear diagnosis (apparently I can also get a little money for the extra cost in food through the Belgian government - the beauty of the European health system! - but only if I get diagnosed as celiac).

If I do need to eat gluten for the diagnosis, any suggestions on how much and how to introduce it to have enough to facilitate the diagnosis but have the least symptoms?!?

Thanks so much for all your help!!! It is much appreciated.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You need to be back on gluten for about 2 to 3 months for any chance of an accurate biopsy or blood test. Are you from Belgium and a citizen? I don't know how their medical system works if you are not a resident but doing a challenge for 2 to 3 months to get a bit of help with food costs for 3 weeks doesn't seem worth it to me. I would just stay on the diet if it is helping.

If you can get an appointment you would need to see a gasteroenterologist and you would need an endoscopy not a colonoscopy.

naturegirl Rookie
naturegirl
Posted
  • Author

You need to be back on gluten for about 2 to 3 months for any chance of an accurate biopsy or blood test. Are you from Belgium and a citizen? I don't know how their medical system works if you are not a resident but doing a challenge for 2 to 3 months to get a bit of help with food costs for 3 weeks doesn't seem worth it to me. I would just stay on the diet if it is helping.

If you can get an appointment you would need to see a gasteroenterologist and you would need an endoscopy not a colonoscopy.

Thanks a lot for the advice. That is good to know that it takes several months. I may try to get an appointment with a gastroenterologist this time around and talk to them about getting an endoscopy and biopsy when I return to Belgium at Christmas time. If I got diagnosed with celiac the Belgian healthcare system would help me financially for the rest of my life (small amount but it might still be worth it). I believe that this would be true even if I am living abroad. I am not actually a Belgian citizen (I am dual British-American) but as the UK has free medical care and I lived in Belgium and they are both part of the EU I can get all my Belgian treatments reimbursed... (paying the 'mutuelle' which is a kind of state funded health insurance 75EUR/year). It is quite amazing! So I try to do every 'check up' (dentists, gynecologist...) when I am back there because each visit is free of costs less than 20EUR once I'm reimbursed. Also the doctors spend a lot more time with you (and there are not the crazy long waiting lists like in the UK). I feel extremely lucky to have access to the Belgium health system, especially with all the health problems that I have been experiencing.

The other reason that I would like to get some kind of diagnosis is that I am still unwell after being on the gluten free diet for over a year. I have never done a 'gluten challenge' so I am not 100% certain that my health problems are primarily gluten-related. I would be happy to stay off gluten for the rest of my life as I have noticed some improvement but if I need to avoid it down to the crumb, make a fuss in restaurants... I would like to be sure that it is worth it. And also that there is not something else going on.

Thanks again for the advice.

ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you have a solid plan. Do start your gluten challenge about 3 months before you go back for Christmas. If you can get into the GI this trip they can always see if something else is going on. Your continued issues could be from not being superstrict on the diet but it is never a bad idea to rule out other problems. Being gluten free will only effect testing for celiac it will not interfere with other tests.

Gemini Experienced
Gemini
Posted

Thanks a lot for the advice. That is good to know that it takes several months. I may try to get an appointment with a gastroenterologist this time around and talk to them about getting an endoscopy and biopsy when I return to Belgium at Christmas time. If I got diagnosed with celiac the Belgian healthcare system would help me financially for the rest of my life (small amount but it might still be worth it). I believe that this would be true even if I am living abroad. I am not actually a Belgian citizen (I am dual British-American) but as the UK has free medical care and I lived in Belgium and they are both part of the EU I can get all my Belgian treatments reimbursed... (paying the 'mutuelle' which is a kind of state funded health insurance 75EUR/year). It is quite amazing! So I try to do every 'check up' (dentists, gynecologist...) when I am back there because each visit is free of costs less than 20EUR once I'm reimbursed. Also the doctors spend a lot more time with you (and there are not the crazy long waiting lists like in the UK). I feel extremely lucky to have access to the Belgium health system, especially with all the health problems that I have been experiencing.

The other reason that I would like to get some kind of diagnosis is that I am still unwell after being on the gluten free diet for over a year. I have never done a 'gluten challenge' so I am not 100% certain that my health problems are primarily gluten-related. I would be happy to stay off gluten for the rest of my life as I have noticed some improvement but if I need to avoid it down to the crumb, make a fuss in restaurants... I would like to be sure that it is worth it. And also that there is not something else going on.

Thanks again for the advice.

I don't think that UK citizens have free health care....they pay hefty taxes on everything to fund the system. That part of the equation is never published. :blink: I have friends in Britain and go there quite often to visit and they definitely pay more taxes than the average American does.

Good luck with obtaining a diagnosis. You will have to do a gluten challenge but you may get your answer from that alone.

It also sounds like you could have additional intolerances as that might explain why you still feel unwell after a year gluten-free.

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. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have...
    2. Scott Adams
      0

      Gluten-Free Foods in Mexico: A Study Raises Safety and Labeling Concerns

    3. Russ H
      - Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease...
    4. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    5. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      315

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,585
    • Most Online (within 30 mins)
      7,748
    canmich111
    Newest Member
    canmich111
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. 
    • Russ H
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By Russ H · Posted

      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
×
×
  • 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.