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

Diagnostic Strategyy?


SuzuRocks

Recommended Posts

SuzuRocks Newbie

Hi All,

I am a 59 year old woman. As a preschool child I had slow growth and digestive problems that were traeted with a restricted diet. I know wheat was "off the table" because on my bithday I had a jello cake. This diet did not last long. I do not recall any restriction in my grade school years and I don't recall digestive problems in grade school and later either and do not have such symptoms now. I had always believed that I had had celiac as a small child and had outgrown it. In 2003 I was diagnosed with hypothyroidism. Medication worked pretty well. However a couple of years ago I hear from some reputable sources that 1) you never get over celiac and 2) it can contribute to thyroid problesm. I did some investigating on the web,, then asked my doctor to send me for testing. It came nack negative. A few months later an endocrinologist tried again. Still negative. It was a blood test. I was eating substantial amounts of gluten regularly both times. I have tried going off gluten a few times and even without worrying about trace amounts subjectively felt better ie less fatigue, etc., but have never gone gluten free for a substantial amount of time.

Now I have high blood pressure which is apparently either due to or causing kidnety stress. I got sent to a kidney and hypertension specialist who sent me for a bunch of tests. He said they were for hidden infections, inflammation, etc. When they took my history I did not mention celiac (it kind of slipped my mind). Later walking home, the word "inflammation" struck me. I again went to the web and found out: 1) At least one kind of inflammatory kidney problem is correlated with celiac 2) Besides thyroid problems several other things that I or family members have had are correlated ie primary bilary cirrhosis, schizophrenia, sqamous cell carcinoma.

I don't know this specialist well and don't know how conservative he is. I did not look closely at the list of tests he sent me to get so I don't know if he is testing me for celac again on his own initiative without me bringing it up. However, especially if it is an inflannation problem, given my history and despite the negative antibody tests, I would like to try a gluten-free diet before going anywhere near steroids or any of the stronger, more invasive hypertension meds. How do I strategize this? I want this doctor to support or at least tolerate this experiment.


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

This advice is based on my personal experience.

Every doctor I have gone to has not suspected celiac or gluten intolerance was causing my chronic kidney problems/infections before I went gluten free. They did not test for it. They never found anything wrong with my kidney function, bladder, or anything else, and only found idiopathic (cause unknown) protein in my urine and a lot of calcium crystals. This was combined with a lot of early age bone loss. I was alternately told to take calcium and not take calcium supplements by whomever looked at me last. Finally a very wise urologist told me to not take calcium in the form of "Tums," or calcium carbonate, because that was making it worse. I got a copy of one of those ob-gyn books by an alternative type practitioner, Christiane Northrup, and she said the same thing, but to instead take calcium in a different form, such as calcium citrate, because that would be absorbed instead of landing in the wrong place, because Tums affects bicarbonate blood levels. Voila! That seemed to help a lot, but I never totally ditched the problem until I went gluten free.

Theory is that since the kidneys are filtering your blood, to regulate calcium levels, and because you, as a celiac/gluten intolerant, don't absorb calcium in the correct way because of damage, they scoop up the excess from the bone loss also, and it ends up in either the kidneys or the bladder as crystals or stones. And unhappy kidneys will send up your blood pressure, besides making your back hurt all the time. NSAIDS and Tylenol make this worse, btw.

Because I do not have a formal celiac diagnosis, there is not a way to "prove" that gluten intolerance had anything to do with it. However, since I do have doctors who have seen me go from chronic bladder/kidney problems to not, I do tell them about it and they are very interested, as I am not in their offices 6 times a year anymore begging for antibiotics for this. It is a tremendous relief to not having this constant threat of infection hanging over my head anymore. I still drink more water out of habit than the regular person, and I am constantly working to keep myself well hydrated. I take calcium/magnesium/D supplements in the forms that do not bother my kidneys, as mentioned above, plus a B complex and multivitamin.

It was thought years ago that children outgrown celiac. They don't. Most people still go undiagnosed, and of those that are, they still do not get a diagnosis until they have other chronic conditions show up as a result of the damage. You may not ever get a "formal" diagnosis, but if you have both the symptoms and feel better on a gluten free diet, that is your answer.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - chrish42 replied to chrish42's topic in Doctors
      2

      Doctors and Celiac.com

    2. - Scott Adams replied to shirlane's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Is AG1 safe for Celiacs??

    3. - Scott Adams replied to chrish42's topic in Doctors
      2

      Doctors and Celiac.com

    4. - nataliallano replied to MagsM's topic in Related Issues & Disorders
      28

      Inflammation and Menier’s disease link?

    5. - Wheatwacked replied to Betsy Crum's topic in Related Issues & Disorders
      5

      Chest pain from celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,259
    • Most Online (within 30 mins)
      7,748

    Karen Lambert
    Newest Member
    Karen Lambert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • chrish42
      All I can say is this site is great!
    • Scott Adams
      From their website I see "organic barley leaf powder" as an ingredient. Keep in mind that the gluten is in the kernel, and not in the leaves. https://drinkag1.com/about-ag1/ingredients/ctr
    • Scott Adams
      Before the rise of social media we were well known by a lot of doctors and were recommended by many, especially our Safe & Forbidden Lists, but as doctors get younger and younger this is probably not happening as much as before. 
    • nataliallano
      Thanks Scott I will definitely check my vitamins and minerals to see what I am missing so then I can supplement. I was very concern about my Meniers syntoms and i tryed to find some alive. Now im just realizing that my celiac is provably the root cause of my Meniers none of the 12 doctors I saw told me anything about this.  This web site is so helpful, thanks to people like you we can get answers. 
    • Wheatwacked
      Vitamin D deficiency can contribute to rib pain. Chest pain stemming from the ribs ccould be costochondritis, which involves inflammation of the cartilage connecting the ribs to the breastbone. This pain can range from mild to severe, potentially mimicking heart attack symptoms, and is often worsened by breathing or movement. Other potential causes include muscle strain, rib fractures, or even referred pain from other conditions.  It will also help to chose vegetables low in omega 6.
×
×
  • Create New...