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

After 7 Years, I Think I Got It


richarda83

Recommended Posts

richarda83 Newbie

So after 7 years of going to doctor to specialists to surgeon, somehow I dont know how i missed this. As I am sure many of you have experienced, in your pursuit to discover the cause of your ailments, you get very excited when you THINK you found something, and then you look silly. At many points I have convinced myself that I have AIDs, lupus, sinusitis, gastritis, in need of lymph gland cleansing, had a larger than normal lymph node removed from my neck, had my deviated septum fixed to clear my sinuses, and rounds of antibiotics, antacids, anti fungal, etc.etc.

So fastforward to today, after NUMEROUS jobs, dropping out of college, failed relationships, and a quality of life my 90 year old grandman would feel sorry for, I believe I have found my ailment. I am willing to look silly, because never before have I realised that after I ate a piece of bread the pain in my stomach, irritability, eyes watering, hands and cold and whole body pretty much freezing, that I could be allergic to gluten. So i googled every symptom I suffer from and continued it with celiac disease and COUNTLESS search results came back. I have swollen lymph nodes that were biopsied non cancerous that have fluctuated in size minimally but emit sharp pains via the stomach. I have had sharp pains throughout my body, foggyness in my head, depression, SEVERE anxiety, hair loss, and paleness. I did have allergy testing done but I dont believe I ever had a gluten test done, and by the looks of it, a negative test is meaningless. All I know is after I ate that piece of plane bread today on an empty stomach, I felt like crap, and still feel tired. I just wanted to say to everyone that while I will not confirm my diagnosis until it is professionally given, I am very quite certain I will be a future member. While I do not look forward to a restricted diet for the rest of my life, I would give anything to finally end the 7 year misery that I have endured. I will be going in for testing tomorrow, and I actually hope I get the answer im looking for. Thanks!


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

It sure looks like you might be one of us?

Good luck with your testing. I hope you get some answers.

Be aware that 20-30% of us test negative in our blood work, but do in fact, have Celiac. There's also non Celiac gluten intolerance, so once your testing is done try gluten-free 100% and see how you do?

kittty Contributor

This sounds cruel, but I hope you do test positive for celiac. It's just incredible to have answers, after years of beating your head against a wall. I was also at the doctors office constantly, getting no solutions, being sent to random specialists, and being prescribed random medications with no relief. I still don't feel completely well five months later, but I feel so much better! Nothing has ever made me feel better before, and it's a long road of recovery ahead, but making progress feels awesome! I hope you start feeling better soon, and especially hope you get some relief for that anxiety - that symptom is my nemesis. I learned to deal with the pain, the diarrhea, the brain fog, but I NEVER could learn to handle the anxiety.

Good luck!

GFinDC Veteran

HI,

It sounds lie you could be one of us. Do get all the testing done that you want before going gluten-free. The tests will not work if you have stoped eating gluten before hand.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

Open Original Shared Link

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. - trents replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

    2. - Dr. Gunn replied to anya22's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test interpretations

    3. - Lotte18 posted a topic in Publications & Publicity
      0

      Prospective CRISPR research

    4. - knitty kitty replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

    5. - Aretaeus Cappadocia replied to Healthierbody2026's topic in Related Issues & Disorders
      15

      New at gluten sensitivity

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

    • Total Members
      133,702
    • Most Online (within 30 mins)
      7,748

    AMJ59
    Newest Member
    AMJ59
    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

    • trents
      @Healthierbody2026, so you say here that you were diagnosed a few years back but in your first post you say you were recently diagnosed. I am totally confused!
    • Dr. Gunn
      As has been pointed out previously, it is not unusual to have mixed tTG and EMA results with active celiac disease. While awaiting your biopsy appointment you could request celiac genetic risk testing. If you don't carry the HLA-DQ2 and/or DQ8 genes, your lifetime risk for celiac disease is < 1%. The celiac risk genes are present in close to 100% of celiac disease cases. If you do carry the genes, biopsy confirmation is essential given your history of symptoms and tTG antibody results.
    • Lotte18
      Hi all,  I'm just wondering if anyone knows whether Theresa Flores of Stanford University has been able to fund her research proposal to use CRISPR technology to directly alter our celiac genetic DNA coding?  I know there's been a lot published on using CRISPR to alter wheat so it's "less" aggravating.  But no one seems to indicate that wheat would then have to be grown in a vacuum.  My understanding is that wheat can self cross pollinate/contaminate if it's grown downwind from other strains of wheat.  Go ahead and correct me if I'm wrong.   Anyway, what I'd really like to know is, what's up with research to directly alter celiac DNA coding?  Is Flores the only person out there proposing this?  Has the NIH funded a CRISPR study for us?   Many thanks, Charlotte
    • knitty kitty
      @Healthierbody2026, Welcome to the forum.  We would like some clarification as to whether you have been diagnosed with NCGS or Celiac disease.  Many people who have gastrointestinal symptoms are diagnosed with IBD or NCGS without proper investigation into Celiac disease.  This can delay a correct diagnosis for as long as ten years or longer.  During that time, health problems related to Celiac disease that occur outside of the gastrointestinal system can show up.  One of those health problems is Diabetes.   I got misdiagnosed with IBD because there was no such thing as NCGS at that time.  I was told I was prediabetic for several years.  I became diabetic and had a cascade of health problems for more than ten years after until I was properly diagnosed with Celiac disease.   Did you have a DNA test to see if you carry any of the genes necessary to develop Celiac disease?  Did you have blood tests for anti-gluten antibodies?  Did you have an endoscopy?  Did biopsy samples show intestinal damage consistent with Celiac disease?  If not... I suggest you have a discussion with your doctor about proper testing for Celiac disease and whether you've had them done.  To diagnose NCGS, the doctor has to first rule out Celiac disease.   @trents could you link that article on antibody tests for Celiac?  Thanks!
    • Aretaeus Cappadocia
      A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another is "Gluten-Free Recipes & Cooking Tips". Others relate to Restaurants, Traveling, and so on. Spend some time surfing through them. - Arguably, the single best food in a gluten-free diet is quinoa. Costco sells a house brand that appears to be gluten-free at a pretty good price. Costco can be a source of some other gluten-free foods. Another resource I found after going gluten-free is AzureStandard.com. I buy a lot of gluten-free foods there. I checked just now and it looks like they have some service to parts of Alabama. - Learn to read food labels carefully and learn what to look for. Don't be shy about calling customer service. - If you can, dedicate your home to be gluten-free. Sort the foodstuffs (any thing that could end up in your mouth) you currently own into "safe" and "not safe". Give away the "not safe". Go through your kitchen systematically and clean everything once. It's like moving into a new apartment of questionable cleanliness. Once it's clean, though, you don't have to worry so much about it. - If you live in a "mixed" household (like mine), start calling gluten-containing foods "poop". Keep as much separate as you reasonably can. While we were transitioning to a safer kitchen overall, we would designate one set of dishes to be safe (and the other for poop). Our kitchen is mostly safe now and we don't segregate dishes anymore. However, when the coprophages want to eat some poop they eat it on the porch and rinse their dishes immediately afterwards. - I don't know the gluten limit for NCGS, but for celiac it is quite low: 20 ppm (parts per million) is the official standard, but some people seem to be sensitive even at that level. One, or maybe a few, breadcrumbs are supposedly enough to trigger symptoms. I haven't tried the experiment myself though. - My transition to gluten-free living has had some silver linings. My health is better. But it has also been a period of personal growth as I've taken up cooking in a serious way. I hope this helps to address your question
×
×
  • 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.