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Gluten-Free And It Helps. I Think.

Squidge

How long Gluten-free before you felt better?  

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Squidge Newbie
Squidge
Posted

When I was born, the doctors told my parents I had "failure to thrive". I was tentatively diagnosed with ADHD when I was 4, and this was confirmed in 1st grade. I was perfectly fine, on ADHD meds, until 8th grade, when puberty, clinical depression, and digestive problems hit. My doctor first diagnosed the digestive issues as IBS, as this is apparently common in adolescents going through puberty. However, unlike the digestive problems of the other adolescents who actually had IBS, mine didn't go away. They got worse. So did my periods and PMS. Seven years later I finally went back to the doctor about this. For the last six months I've been poked and prodded being tested for all sorts of things, from hemorrhoids to Crone's disease. They finally tested me for Celiac's. I'd like to point out that not all my symptoms fit Crone's or hemorrhoids, but they all fit Celiac's. I'm rather upset given my history that my mother actually had to tell my doctor to test for Celiac's. He'd already given up. Anyway, the blood tests came back negative, but I heard the this is actually quite common even among people who have Celiac's. Out of desperation, I went gluten-free and for the first couple weeks I felt much better. Then I got my period, and all hell broke loose again. Now that my period is over, I'm feeling better again. I also accidentally ate gluten 3 times since I went gluten-free and each time I had pains and the 3rd time worse than pains. How long should I go before I talk to my doctor about my little gluten-free experiment? I mean I've had good periods before with a few bad days sprinkled in, and they usually happened with the period suddenly causing havoc. How long before I can say the gluten did it? I want to get an actual diagnosis, because I have to try and get accommodations at school for the food, and they'll give me a hard time if I don't have a diagnosis. When should I go to my doctor, and what should I say?

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    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By trents · Posted

      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
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