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Anything Else I Should Be Doing?

BlueFenris

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BlueFenris Newbie
BlueFenris
Posted

So I came across celiac disease completely by accident because I saw something about it and was curious so I looked up more info. As I was looking at stuff, I realized that the symptoms sounded a bit too familiar for comfort. I've struggled with anxiety, depression, bloating, constipation, and migraines for a long time. I also definitely have brain fog, I've had very low vitamin D test results, I've always been super pale, always tired, been very irritable, had major mood swings, insomnia, prone to canker sores, etc. The migraines became such a problem that last year I barely managed to pass my senior year of high school because I was having nearly daily migraines. We finally found a treatment that worked for a while but now the migraines are become more frequent again, and when I don't have a migraine I seem to have at least somewhat of a regular headache, and recently my stomach has been aching quite often too. So after seeing that all of these can be symptoms of celiac disease, I scheduled an appointment for Friday to talk to my doctor and have the blood tests done. I've got a list of my symptoms written down and am still on a gluten diet. Is there anything else I should do to prepare or does anyone have any pointers for me? On the one hand I hope it's not celiac, but on the other hand, if it is, a change in my diet could potentially change my life and take care of so many issues I didn't think were related to each other. 

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GFinDC Veteran
GFinDC
Posted

Hi,

If you are near a large city, you could look up a celiac support group now.  Contact them and ask if they know any good celiac aware doctors.  Many doctors don't seem to be aware of proper tasting processes.  If you do find a local celiac support group they may be able to help in other ways too.

Otherwise, it sounds like you are doing the right things so far.

BlueFenris Newbie
BlueFenris
Posted
  • Author

I do know there's a support group about an hour's drive from where I am. I'll get in contact with them! Thank you!

cyclinglady Grand Master
cyclinglady
Posted

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

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BlueFenris Newbie
BlueFenris
Posted
  • Author
1 hour ago, cyclinglady said:

I would add that you request a full celiac panel (EMA, TTG and DGP).  Why?  Because the typical screening TTG test is very good, but it does not catch all celiacs (like me).  Here's the list of blood tests:

Open Original Shared Link

Okay, I will be sure to request that! Thank you for the input!

BlueFenris Newbie
BlueFenris
Posted
  • Author

Update! Had my appointment today and the doctor said she was going to order a full celiac panel without me even having to request it! I was overall impressed with how well my doctor handled this and listened to my concerns rather than writing them off like some people's doctors have.

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    • Kirita
      Recovery from gluten challenge

      By Kirita · Posted

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
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      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
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