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

Help...i'm New


I'm Hungry

Recommended Posts

I'm Hungry Newbie

Greetings from the 'boro -

I found this website last week and have been using it as a guide for daily living since I have practically diagnosed myself as celiac. I have a plethora of symptoms and different allergies. I'm at the end of my rope - no doctors care to help (they think I'm a hypochondriac) and I've given up on them. My mother died the day I got an allergy test (July 1, 2005) of an unidentified stomach cancer - she was only 39. Not a single test showed that she had cancer but a doctor said that it was wrapped around her intestines when he attempted to perform a surgery on scar tissue in her stomach. So, needless to say, I'm a little worried and VERY sick of being sick! So...if you don't mind, please continue reading and I am happy to accept any and all information/help that you all may provide!

I started college in 2001 and was in the best health of my life. I worked out everyday and ate very healthy - all veggiess/lean protein/and fruit! I was 122 lbs and then one fateful day (in March) I began my battle with constipation, gained 15 pounds within 1 week (I had to wear my roomates clothes to class it happened so quick) and have gradually gotten more plump since - I'm at 160 now. I had severe pain in my stomach and tried everything to use the bathroom with no success. THe school infermery concluded that I have IBS, GERD, lactose-intolerance and stress - whoop-dee-do! This continues...

In 2004, I had a colonoscopy and an adenoma polyp removed. This started a ton of blood tests which were inconclusive for thyroid problems/chrones/celiac...I found a doctor that would sit and listen to me and actually care what I told her; she tested for thyroid and the test came back as me having a 9.04 tsh level - she called to tell me the day that I was moving to another city. I went to a new doctor once I moved who told me (after a blood test) that my tsh was fine and that I was too young to have a thyroid problem. Hah.

7/1/05 Prick test for allergies...the nurse joked that she was going to "place you (me) in a bubble and send you to Alaska!" I was allergic to everything that I tested for except for Chocolate. This included WHEAT, soy, dairy, melons, trees, grass, animals, etc.

I got married in April and the 16 weeks before the wedding, went wheat-free. I felt slightly better and was not as bloated as before. I tried adding it back during my honeymoon and got sick as a dog (I wanted to vomit but couldn't, instead, got diarrhea).

So...here I am today. I try to avoid wheat and lactose as they seem to triger my worst symptoms. I keep coffee and fiber at hand in hopes of a BM once a week. I am so bloated/distended that I barely fit into any of my clothes; even shirts that I bought last week won't fit now (and no, I haven't dried them).

I am miserable! I'm losing my mind, I can't remember anything, I can't stay awake throughout the day and I have no energy after work to even drive comfortably. If I eat ANYTHING consistently - as in more than 2x a week - I will become instantly intolerant for months. Bananas are a good example. If I have 1 banana, no repracutions, 2 bananas, still okay - 3rd banana within 7 days - my throat will swell, tongue will breakout and lips will swell. I keep a "geographic tongue", a constant skin rash of sorts, always have either hiccups/gas/burps - sometimes all 3 at once, migraines, joint pain, swelling in my hands/feet, I haven't had a period in 2 months and I'm not pregnant ( I tested)...the list goes on and on- I get hives from my own sweat!!! I'm really lost and feel helpless and hopeless.

I'm so sorry for such a huge post and I am sooooo grateful for any advice.

Thanks to you all for listening - anxious for a new lifestyle.


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



Celiac.com Sponsor (A8-M):



Guest BERNESES

Welcome to the board! I'm glad you posted. Your story sounds like a lot of people's stories on here. i think you'll be in good company.

First of all, I'm sorry about your mom. My mom died in 2003 of stomach cancer and I know how brutal that is :( I'm adopted BUT celiac runs in my mom's side of the family and my mom's cancer was a very rare stomach cancer. Most stomach cancers are squamous cell carcinomas and her's was not. They was absolutely no reason why she should have gotten it in terms of lifestyle, but looking back, she thought her mom died of it too. I often wonder in retrospect if my mom was a silent celiac with no symptoms.

it seems like everything you mentioned- constipation, bloating weight gain, thyroid and GERD and lactose intolerance are really common in those of us with Celiac's.

first off, get off gluten- not just wheat, but all of it. Eliminate everything you are allergic of and intolerant of or suspect you are intolerant of and try a really basic diet. Meat, whatever veggies agree with you and whatever you are NOT allergic to. try rotating your foods. If having a banana more than once a week bothers you, don't have one more than once a week.

The tongue thing I've heard about celiac's too. There a LOT of GREAT people on this board who will be able to answer your questions and trouble shoot with you, so ASK away. Also, try to get in to see another doctor- maybe an endocrinologist- about your thyroid. That could be part of the problem too. Hugs and welcome, Beverly

Guest BERNESES

oops- I'm sorry. Most stomach cancers are adenocarcinomas and hers was squamous cell carcinoma.

Ursa Major Collaborator

Hi, and welcome to this board. As Beverly said, your symptoms sound awfully familiar. I had to diagnose myself as well, because the doctors didn't believe I could have celiac disease, because I was gaining weight, instead of losing it. They are just too ignorant.

You need to not just eliminate wheat and lactose from your diet, but all gluten (wheat, rye, barley, oats and everything that contains even trace amounts of those), as well as all dairy (for now). In fact, you may need to cut out all grains and starches to halt your weight gain, and to get rid of that bloating.

Make sure you go through all your personal care items (shampoo, conditioner, toothpaste, lipstick, lotion, soap etc.) and replace everything that contains things like wheat germ oil, barley extract, oat bran or whatever looks suspicious. You will also need a new toaster if you are planning on eating gluten-free breads (probably not a good idea for you, though), as you can't clean a toaster well enough to make it safe. You need to replace (or have your own) wooden cutting boards, wooden cooking spoons, plastic strainers, and scratched non-stick cookware.

Cutting out soy might be a good idea, too, as well as corn for now (to be tested after a few weeks to see if they cause a reaction).

And yes, get your thyroid checked again by somebody who knows what he is talking about!

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. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    2. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,258
    • Most Online (within 30 mins)
      7,748

    TracyMc
    Newest Member
    TracyMc
    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

    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
×
×
  • 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.