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

New Member - Quick Intro


ynot

Recommended Posts

ynot Newbie

Hi everyone,

I've been lurking since March 2010. I think I've read just about every post on the forum and I'm grateful for all the information that has been posted. So I guess it's my turn to contribute as best I can. I'll try to keep it short.

First, I have no diagnosis. I have not taken any tests. And I don't plan to. There were two symptoms that originally brought me to this forum.

1) A distended abdomen that seemed to get worse as the day went on.

2) Unreasonably horrible hangovers from a few beers.

Although the horrible hangovers didn't happen every time I drank beer, it seems like it was the majority. It was so bad I thought for a long time I was just getting food poisoning somehow, but none of my friends ever got sick. The hangovers usually lasted 2 days, complete with vomit, diarrhea, and super sensitive skin that hurt at the slightest touch.

After reading many posts here and identifying with many other symptoms I went gluten free in March. I don't know if I'm Celiac or gluten intolerant or it's all in my head. I do know I feel better. At four months gluten free, everything is better. Not perfect, but better. And I haven't had any more hangovers.

Here are a list of symptoms I have had that have improved in the last four months.

1) pencil thin, broken up, pasty/greasy stool

2) frequent bowel movements ( 6 times a day )

3) frequent urination

4) acne - face and back

5) sweaty palms and feet

6) irritability, anxiety

7) stuffed up nose

8) puffy/swollen face in morning

9) occasional light swelling in ankles

10) swollen knees

11) occasional numbness in fingertips

12) symptoms of reactive hypoglycemia

13) heart palpatations, skipping beats, and ensuing adrenaline rush

14) having a full stomach and still feeling starved - strange cravings which can't be satisfied

15) reoccuring lower back pain

16) muscle twitches - legs and arms mostly

17) muscle cramps - legs and feet

18) unsteady muscles ( for example - my whole left leg shaking when my foot is on the clutch )

19) arms going numb while sleeping

20) awakening with severe vertigo

21) painless bruise like spots which show up on the upper legs and hips after exercise

I do attribute the improvements in these symptoms to my change in diet, but I'm not absolutely convinced gluten is the problem. It could be the reduction in carbs or dairy or something else. ( I am nearly dairy-free, simply because I don't like much dairy )

I follow the diet fairly well. I read labels and I never intentionally ingest gluten. However, I am not extremely careful with cross contamination. I order fries when I'm hungry and there is nothing else on the menu to eat. I haven't worried about cutting boards or shampoos or anything like that. I figure I must have accidentally gotten some gluten many times, but I've never had a reaction. But then again, I never had the day in day out GI pain most celiacs get.

That's it for now.

ynot


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome, you do sound like you belong here. I can really identify with the horrible hangovers. The most puzzling thing for me about them was that I drank nonalcoholic beer. I couldn't understand how in the world I would have hangovers when I never got drunk.

Most of us do need to drop dairy or limit it at first. IMHO though it is not the limiting dairy or carbs that is resulting in the great improvement you are seeing. You do have the option of going back on a full gluten diet for a couple months for testing, but you do risk false negative results even then. There is also the option of going with Enterolab testing. As long as you have been gluten free for less than a year they would still be able to pick up the antibodies. Enterolab does not diagnose though, they simply tell you if you are making antibodies but you body doesn't produce antibodies to something it doesn't want.

Do ask any questions you need to and I hope you continue to improve.

Skylark Collaborator

:lol: Beer always wrecked me too.

If you feel better eating gluten-free it's not in your head. I'm glad to hear you figured out something that helps you feel better.

The full stomach/cravings and feeling starved is thought to be your body wanting particular nutrients it can't get because of malabsorption. You might feel even better on a good vitamin/mineral supplement. B12 is particularly helpful for folks with gluten intolerance.

ynot Newbie

Thanks for the suggestions. I will look into some B12 supplements. On a related note, 15 or so years ago I followed a vegan diet. That lasted about a year. I know B12 must often be supplemented, but I never worried about it. I guess I just ate a lot of bread and tofu. Anyway, this is when I had my first ( of two ) really severe depressive episode. Not fun. I guess we could draw some conclusions.

It's interesting to hear that beer, even nonalcoholic beer, wreaked such havoc on others. I wonder if there is something unique about the way gluten in beer is absorbed. Beer really does seem to be the crack cocaine of gluten for me.

As far as testing goes, I don't really feel like I need it to stay on the diet. And I have no desire to challenge gluten.

Thanks again.

Archived

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

  • 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 replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    2. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

    3. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

    4. - pothosqueen posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,992
    • Most Online (within 30 mins)
      7,748

    Elizabeth xxx
    Newest Member
    Elizabeth xxx
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
    • pothosqueen
      Upper endoscopy last week resulted in positive biopsy for celiac disease. The IgA they ran was normal (114). Does positive biopsy automatically mean definitive diagnosis?
    • hjayne19
      This is great thank you very much @Scott Adams
×
×
  • 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.