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

Is Celiac My Magic Bullet?

AerinA

Recommended Posts

AerinA Rookie
AerinA
Posted

Hi everyone.

Sorry in advance for a long post...

Basically, I'm one of those people with a really, really, really complicated medical history. I was born with a kidney deformity, got that taken care of. I've had problems with ADHD my whole life, had migraines since 4th grade, I don't remember ever NOT feeling sleepy (not quite narcoleptic but close), most recently had thyroid cancer. Every time they come up wtih some new diagnosis for me I think "hey, maybe THIS will fix my brain fog!" or, "maybe I'll start to be less sleepy now!" My immune system has always been terrible too, and I have a bad habit of nearly bleeding out on the surgical table. I'm so tired of feeling like a dysfunctional human being, like my body is falling apart--I probably couldn't list all my symptoms if I tried, since I don't know what's causing what, I don't even think I could make a comprehensive list.

Most recently, I changed endocrinologists due to my synthroid not absorbing at all, and my previous doc not really paying attention (my TSH was 27 even taking my meds every day ?!?!) She immediately found that I had undetectable levels of D2 as well, though I had small amounts of D3. She says she strongly suspects celiacs, but doesn't want to put me through a biopsy. I haven't yet gotten to scrutinize the results of the blood work they did, whatever it was.

Based on my lifelong symptoms, I'd say that a lot of things would be explained by celiacs, but I'm overweight (used to be under but... with the thyroid issues it's hard to know the real cause of that), tend to have IBS problems but NOT the classic multiple bathroom trips (tends to be the opposite), and I have had so many other conditions (and surgeries, and treatments, and everything else) that I have no idea if I'm barking up the wrong tree. A biopsy doesn't sound like the end of the world, but what if it's negative? I've been at a loss for a really long time, it would be SO nice if going gluten-free fixed stuff, but I hardly dare to hope for it. Anybody have input or experience similar things? Any advice at all would be much appreciated.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I think you need to get a copy of your blood test results to find out what tests they did and what the results were. If they did not run the celiac panel they should do so. If they did you need to know what the results were, especially iif she strongly suspects celiac disease.. One doesn't normally have a biopsy just for low vitamin D.

ravenwoodglass Mentor
ravenwoodglass
Posted

Do get a copy of the test results. If they are positive it sounds like your doctor will consider you diagnosed. Since there is a chance of a false negative with the biopsy anyway some doctors are diagnosing without one. After you are done with all the testing you choose to do give the diet a good strict try no matter what the results of testing.

T.H. Community Regular
T.H.
Posted

...and if the tests and biopsy are both negative? There is absolutely nothing stopping you from trying the diet yourself, either. A number of people here have tested negative for celiac disease, both blood and biopsy, but had symptom improvement (or complete reversal) on a gluten free diet.

Re: the symptoms? I don't have the big D, either. I never thought I had gut issues, but now I notice I get the opposite when I get gluten, too.

eatmeat4good Enthusiast
eatmeat4good
Posted

I've been overweight too and that is also a symptom of Celiac, not just the weight loss. It has to do with swelling and inflammation. Your thyroid medication not being absorbed is another indicator. I just read the book by Peter Green, Celiac A Hidden Epidemic. In this book he discusses exactly what happened to you in the case of your Thyroid med not being absorbed and he describes two cases where women were diagnosed with Celiac because their astute doctors recognized the medication was not being absorbed.

Ask for a full Celiac Panel and if you want the biopsy ask for it. After everything else you have been through, it seems ridiculous that your Dr. "doesn't want to put you through that" particularly if it will give you a diagnosis. However, like they said above, if your Dr. is willing to diagnose you without the biopsy based on your bloodwork, then you will be able to get on with eliminating gluten from your life and start feeling better.

What you are describing as brain fog began to lift for me withing the first two weeks of being gluten free.

You just may have your answer now.

Do dare to hope.

AerinA Rookie
AerinA
Posted
  • Author

Thanks for the input, everyone.

I've been on the diet for a month now, I still haven't seen my doctor again post-blood work so I haven't gotten to analyze it, but I'm feeling much more awake and "with it" now, so I'm staying on the diet regardless of what it says. It can only get better from here.

eatmeat4good Enthusiast
eatmeat4good
Posted

That is wonderful!

Thanks for posting, I was wondering how you were doing.

I hope everything continues to get better.

It is really amazing how incredibly ill one can be from gluten.

At 4 months into this diet, I continue to get better everyday.

Take care.

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

Celiac.com Sponsor (A8-M):


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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.