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

Need Advice


Wasabi

Recommended Posts

Wasabi Newbie

I have been experiencing some severe symptoms for many years & in the last 5 years they have become more serious. I've gone to doctors but they've never tested me for celiac disease but I am beginning to believe that is the problem.

I have the following symptoms:

malabsorption - to spite taking supplementation (the doctors have verified I do have this issue but haven't determined the cause)

insomnia

muscle pain

joint pain

diarrhea (have been treated for IBS)

severe hair loss

general fatigue

mouth lesions (which have improved with B12 shots)

finger nails have many deep Beau's lines particular thumb nails

I have had some testing- intrinsic factor which came back normal. I have one of the genes for MTHFR, I did think that was my problem and have been supplementing with folate & B12 but the hair loss & other symptoms haven't been eliminated although the fatigue is somewhat better. I also have been tested for thyroid & anemia (iron) both came back normal. I also was treated for GERD because the doctor thought the mouth lesions were from acid reflux, the medication made my symptoms worse.

I also had H. Pylori and was treated. I've had IBS for many years and after the H. Pylori was treated it improved but I still have problems with cramping & diarrhea.

My symptoms have been at their worse for the last five years. I was in the Caribbean and came down with a sinus infection. I saw a physician and was treated with a heavy dose of Augmentin which caused me to have severe diarrhea. Afterwards my symptoms worsened. Afterwards I saw a physician (that has a nutritionist in his office) and was given probiotics as well as other supplements.

My symptoms improved for awhile but now I feel very ill again and my hair loss is worse (I've lost about 60% of my hair). The nutritionist suggested that it was possible that my problems were due to celiac disease but I was never tested. I moved across country and now am living in Orange County CA. To be honest I've worn out with seeing doctors and trying to find out what is wrong. Not sure what to do or where to find a physician that can help me. Any advice would be so very much appreciated.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hello and Welcome!

Although your symptoms are consistent with Celiac, I would encourage you to continue to seek medical advice.

We can recommend a support group in your area, who can refer you to a qualified physician. Don't give up! ;)

Open Original Shared Link

Wolicki Enthusiast

I just sent you a PM with some good info :P

Wasabi Newbie

Hello and Welcome!

Although your symptoms are consistent with Celiac, I would encourage you to continue to seek medical advice.

We can recommend a support group in your area, who can refer you to a qualified physician. Don't give up! ;)

Open Original Shared Link

Thank you Lisa! Very much appreciated.. I left out a few symptoms that I thought of after I posted this, I have heart palpitations and I had liver enzymes in my last blood test although I am NOT a drinker or anything close! I'll be seeing a doctor in my area... thanks for encouragement!

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 catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      My journey is it gluten or fiber?

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
    • Wheatwacked
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
×
×
  • 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.