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

Appointment With Gp


glutentheintolerant

Recommended Posts

glutentheintolerant Rookie

So, based upon what I've read and has been recommended to me I decided to make an appointment with my GP to have a talk with him about further testing. I'm seeing him in one week time.

I'm being given a whopping 10 minutes to tell my story so I'd like to get everything I want to speak sorted on a list out before I head in to make the best use of the time and to make sure I don't miss anything.

I've been gluten-free for about 8 months with the occasional contamination (Not more than two or three times, mainly in the beginning.) most of the food products I have come from guaranteed gluten-free sources.

I'll definitely request a gluten blood test even though the odds are small that I'd test positive, they're probably greater than winning the lottery.

These are some things I'll definitely want to talk to my GP about;

  • Casein intolerance
  • Hashimoto's thyroiditis
  • autoimmune thyroiditis

Then there are a few things that I can't really name because I'm not quite sure what I have to ask for:

  • Vitamine deficiencies
  • other deficiencies that my GP (or you guys) deem likely

So, what am I missing? Apart from an endoscopy, that is. I am not willing to go through with such a procedure at this point in my life. I had a bronchoscopy performed on me and it bordered on traumatizing.


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



Celiac.com Sponsor (A8-M):



glutentheintolerant Rookie

No one has any hints? Hm, well O.K. I'll just keep the list as it is, then. I guess that the GP will first want to see some bloodwork before he orders any additional tests judging from what I've read here.

pricklypear1971 Community Regular

It sounds like you're going in well prepared. I'd toss in genetic testing since you are already gluten-free.

The most common vitamin deficiencies seem to be b vitamins, calcium, magnesium, vitamin d.

Be prepared for pushback and state very clearly you want this testing. If doctor thinks otherwise, day ok test for that too. BUT I WANT THIS TESTING.

glutentheintolerant Rookie

Thanks, added those to the list. The genetic testing is about the DQ2 and DQ8 genes, right?

I've also seem become contaminated with gluten between now and 48 hours ago. Entirely by accident and I have no idea how (Probably a failure in hygiene) but it did give me a chance to write down all the symptoms I often had before I went gluten-free but never fully managed to relay to my doctor(s).

JoshB Apprentice

Getting a blood test after that long gluten free is a pointless waste of money. Your doc might humor you and test for thyroid antibodies, but it's more likely that he'll ask to go back on gluten for a few months to do a proper celiac blood test first.

glutentheintolerant Rookie

Getting a blood test after that long gluten free is a pointless waste of money. Your doc might humor you and test for thyroid antibodies, but it's more likely that he'll ask to go back on gluten for a few months to do a proper celiac blood test first.

Hm, that's a bridge I'll cross when I get to it. A long bridge at that.

Any idea what kind of gluten-poisoning we're talking about? A cookie per day or entire meals?

Still, the main purpose of my visit is to find out if I have suffered any damage under the hood from living with gluten for many a year and if I have any other problems that may have been hidden before my new diet. I already know I'm sensitive to gluten, I could live with that never being made official.

pricklypear1971 Community Regular

Well. I think it's 4 slices of bread for 3 months for best shot at antibody blood work.

If you want info on how your intestines are doing, consider Enterolab. They do antibody, gene, and fat measurements from stool samples to determine those things (DNA is swab). No doctor needed.


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



Celiac.com Sponsor (A8-M):



glutentheintolerant Rookie

Well. I think it's 4 slices of bread for 3 months for best shot at antibody blood work.

every day? :blink:

I saw Enterolab being recommended before. I am from Europe and given the way our health-insurance works I'll be doing most of my testing through a hospital. If I go through the proper channels that should cover most of the expenses.

I'll get back at you once I've discussed all these tests and findings with my GP. First time ever that I'm looking forward to talking to a doctor.

pricklypear1971 Community Regular

Yep. Every day.

I've heard Celiac is dx more in Europe by gluten withdrawal and challenge. Perhaps ask?

I don't know if Enterolab takes orders from outside the US. It isn't expensive.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,928
    • Most Online (within 30 mins)
      7,748

    quilterjoyce
    Newest Member
    quilterjoyce
    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

    • cristiana
      Hi @aperlo34 Welcome to the forum. I am so sorry to read that you have been going through all of this.    Firstly, I should say that your experience of anxiety is very common, and also, the worsening of symptoms is also something we see reported quite a lot on this forum.  Achy joints, twitching as you describe and other symptoms were things I had and they all seemed to worsen for a while before they got better.  I am a coeliac based in the UK and here, unless we are extremely fortunate or pay for private treatment, we are tested for very few deficiencies - my iron was low, my B12 borderline normal and vitamin D borderline normal, but I have absolutely no doubt in my mind that had I had the full spectrum of vitamins and minerals tested, it would have shown deficiencies.  Your test reveals normal levels but it could well be you are lacking in something not on that list. My nutritionist at the time put me onto a broad spectrum supplement of every vitamin and mineral under the sun for a few months, until my GP said she thought there was too much Vitamin A in the pill so told me to stop taking it!  But one thing you could do is to take something similar which will address any deficiencies you are unaware of.   I would say one Vitamin which you could should supplement is Vitamin D.   Your lab reports show you are borderline normal, I'd say there is quite a lot of room for improvement there.   Symptoms of deficiency/low levels include:  Muscle pain, Bone pain, Increased sensitivity to pain, A tingly, “pins-and-needles” sensation in the hands or feet, Muscle weakness in body parts near the trunk of the body, such as the upper arms or thighs, Muscle twitches or tremors, Muscle spasms (source: https://www.yalemedicine.org/conditions/vitamin-d-deficiency) When I first joined this forum ten years ago or so, I found myself in the company of a lot of people complaining of twitches and spasms, and others who shared that it took a few months to clear (disappointing, but realistic!) which gave me hope that what I was encountering was temporary.  And indeed it was ...  it took a while but things did get better. As I mentioned earlier, anxiety is problem for many newly diagnosed coeliacs and when adrenaline is running through you it can exacerbate or even cause twitching and spasms.  This happened to me, my eyes twitched, my calves twitched etc.  Trying to understand the anxiety and what to do about it, I bought these two publications.  They helped me no end, and they may help you. https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814 (Yes, it says depression, but this book helps with anxiety, too, through physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep, social connectedness and meaningful, engaging activity) https://anxietynomore.co.uk/product/at-last-a-life/ (Note, there is a lot of help on the anxietynomore website). So aside from the anxiety, the other thing you need to do is to keep away from gluten.  This will help you. I apologise for all the reading you have to do, but hopefully something will help. Lastly, did they test you for any thyroid issues, to which some coeliacs can be prone? Do come back to us if we can help further, and remember, there is a good chance that what you are experiencing is temporary.😊 Cristiana                  
    • trents
      Not being able to implement all elements of a discipline does not necessarily mean going through with the rest of it will not benefit you.
    • aperlo34
      Hi everyone, 29 years old, got my diagnosis in September. This has been the longest 2 months of my life. This was my first real dx and I wasn't having much for symptoms before (1x bad constipation, irregular BM schedule). I struggle with pretty bad health anxiety and I've been freaking out pretty consistently for 4+months (when I was told I needed a colonoscopy).  Basically since the colonoscopy was ordered in July, I started having small muscle twitching all over - this comes and goes but it's about 1 or 2 twitches every minute or so. I've also been super active this summer, riding 4k miles on my bike and accidentally losing 20lbs which I didn't really need to do. Since gluten free I've been all over the place diet/fitness/sleep wise and have had all sorts of weird symptoms: muscle twitching since July sinus(?) headaches since September extremely tired since October Dry eyes for the last 2 weeks worsening headaches in the morning especially and in the back of head/sinus area stiffness in body/neck/hands/joints general shakiness/weakness Vitamins levels from last week: Magnesium 2.3 (ref 1.6-2.3) B12 406 (ref 232-1245) Vit D 43.6 (ref 40-100) Folate 11.4 Glucose 84 (ref 70-99) Ferritin 117 (ref 30-400) Iron Sat 48 (ref 15-55) It's hard for me to know what is and isn't celiac related, and every rabbit hole I go down online leads me to horrible places. I'm just hoping there is some sort of light at the tunnel and that one day I'm going to feel better. I felt great until this diagnosis (as far as I could tell). Does anyone have any experience being relatively asymptomatic and then feeling like complete trash after gluten-free?    Thank you so much.
    • glucel
      I was checking aip diet and discovered that aspirin is prohibited. I definitely can understand why that is but my cardio dr says to stay on it. So aip is done before I even get started.
    • cristiana
      You are more than welcome.  I think there are quite a lot of different types out there, my own nutritionist was a v. highly qualified scientist as well, but at least you can see what qualifications they are which seem to be quite well stated.  I wish you all well on your son's coeliac journey. Cristiana
×
×
  • Create New...