Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

My Story... If It Helps Anyone


Robina

Recommended Posts

Robina Contributor

I believe I have had celiac's since before my children were born 15 years ago...

During my second pregnancy... I was violently ill... throughout the entire 9 months... then about a week after my son was born... I had emergency gallbladder surgery...

After that... my hair started falling out, I was depressed, fatigued, I couldn't lose weight no matter what I did... and I had chronic diarrhea...

Fast forward a few years... I took this class through college... alternative health and healing... I joined a gym, hired a nutritionist, a chiropractor and began eating food closest to its natural state (fruits, veggies, etc.)... started feeling like a million bucks and the weight just started melting off...

then I finished college and started working as a paralegal... started having to eat more convenience foods which meant an increase in my breads and grains... got very sick with flu like symptoms that would not go away... then the weight started coming back as well as diarrhea and edema... but the docs couldn't figure things out... everything kept pointing to my thyroid but all my thyroid tests were "normal"

I was checked for lyme disease... also normal... then my paincare provider tested for thyroid antibodies... which came back high... so I was dx'd w/ Hashimoto's Thyroiditis... I started a Hashi's friendly diet... that helped a little... but I still couldn't lose weight and still felt incredibly drained and sick all the time... ended up leaving my job...

Fast forward two years... I was fed up with being sick, tired and fat... I went back to the gym and started working out vigorously... changed my diet to be mostly protein and veggies... the weight started coming off again... felt wonderful... then I was offered a position at my gym as their new personal trainer... things finally started coming together for me... but... in starting the new job as well as starting my own training biz... I found I needed convenience foods again... started eating Kashi products... and alot of them... 7 whole grains on a mission and all...

Anyway... the GI problems started up again... but this time it was severe constipation... and my hair began falling out rapidly and by the handfuls... you could see my scalp... fatigue also set back in and I was constantly bloated and gassy... the abdominal and flank pain were so bad that it would wake me up all through the night... it was just awful!!! But instead of gaining weight this time I began losing... rapidly..

Went to this doctor and that doctor... had test after test... xray, scans, you name it I had it done... they all thought it was either cancerous tumors, or hormonal issues... nada...

Not once did the doctors have the presence of mind to test for celiacs... nor was I ever referred to a GI... although one doctor wanted to put me on amitryptolene(sp?) to relax my stomach muscles...

I wasn't settling for the "it's all in your head" or "it's stress" lines of bs and I certainly wasn't just going to start taking random meds... I researched diligently on the pc... I also went to an acupuncturist (who helped me with my Hashi's before) and when the constipation was so severe that I was literally full of s--t... I went to a colonic hydrotherapist... who is also a nutritionist and an RN... anyway... she advised me to eliminate grain from my diet... and to start drinking green smoothies... I did as she advised and wouldn't ya know... the GI upset totally disappeared...

One night shortly after... my husband and I had chinese food... well I was up and down all night with GI pain and upset... so I did some research using all my test results, what the CHT told me, etc... and google kept bring me to celiac links... which is how i found this board...

when I started reading about all the symptoms everyone experienced... the light went on... I immediately went through my house... my pantry... my bathroom... EVERYTHING... and boxed up all products that either had gluten ingredients... or... the ingredients were questionable... and I sent the boxes off to my mom...

I replaced all my food with gluten-free foods that I found out about on here... I replaced my make up, my skincare, my haircare... everything...

Since doing all this I haven't had any GI issues... my hair loss (as I said) continues... but has definitely tapered off... and... I have new healthy growth coming in according to my hairdresser...

oh... I also used to get wicked bad acne and my face has cleared up completely...

Now... I have never had an official dx for celiacs... but... based on my research, my symptoms, etc... it just seemed like all the pieces of the puzzle fit... and... given the fact that my mystery symptoms have either greatly reduced or disappeared since going gluten free... I would say that an official diagnosis at this point would be moot... not to mention that traditional western medicine has failed me so much in the past that I wouldn't trust anyone in the field to give me a straight answer... besides... doctors are trained to treat symptoms with pharmaceuticals... not to find and treat the root cause of symptoms...

Anyway.. just thought I'd share my story in hopes that it may help someone else out there...

as an aside... I am treating with practitioners... just holisic ones... I just don't have faith in regular doctors anymore...

It's still very early on for me in this thing... and I know I have a long road ahead... but I want to thank all the people on this board for sharing their wisdom and being so super friendly and helpful... I couldn't have made it to this point without you guys/gals...


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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

Thank you for sharing your story. It's amazing isn't it? All of a sudden, everything adds up. Even the stuff you didn't know was related to each other.

Welcome to the board!

Nancy

Robina Contributor
Thank you for sharing your story. It's amazing isn't it? All of a sudden, everything adds up. Even the stuff you didn't know was related to each other.

Welcome to the board!

Nancy

No prob... there's so much more to it than what I wrote but I'd be here typing still if I didn't try to trim it down a bit... lol... Yeah... it is amazing... and kinda scary... I don't know where I'd be if I just completely put my faith in the docs and didn't try to find things out on my own or pursue alternative treatments... I really feel bad for those out there who are still suffering and undiagnosed... almost makes me want to cry...

Ursa Major Collaborator

Thanks for sharing your story, Robina. Sadly, it's not an unusual story. It took me 52 years to figure it out, my doctors were just as clueless as yours. My primary care doctors are now my chiropractor and a naturopathic doctor. My regular GP is only needed to order tests and to give me referrals, as here in Ontario you can't see any specialists unless you have been referred by a GP.

Nantzie Collaborator
No prob... there's so much more to it than what I wrote but I'd be here typing still if I didn't try to trim it down a bit... lol... Yeah... it is amazing... and kinda scary... I don't know where I'd be if I just completely put my faith in the docs and didn't try to find things out on my own or pursue alternative treatments... I really feel bad for those out there who are still suffering and undiagnosed... almost makes me want to cry...

I know what you mean. Thank God for the internet.

Seriously.

If it wasn't the ads on the sides of search pages, I never would have heard about celiac. It's scary where I would have been.... and where most of us here would have been without search engines... {shudder...}

When I first went gluten-free, I felt like I had a full-body transplant. It was a very weird, surreal experience. So that disbelief, pinch-me, scared I'm going to wake up in pain or GI distress feeling or worry, is totally normal. It's such a dramatic, and nearly completely unexpected improvement that it's normal to walk on eggshells for a while.

I know what you mean about wanting to cry for all the people out there who are in pain and don't know what's wrong. I'm sure you've thought through your family and friends and can spot the potential celiacs.

My philosophy on it is to show them how easy it is, which you may not know yet... Probably a good half of my family, and even a lot of my friends have some sort of stomach issue. Even my brother-in-law was talking to me tonight about it. He has moderate stomach problems, and his son has mild stomach issues as well as ADHD. He has, of course, seen me go from being so miserable to being happy and strong. He was asking me about it a bunch today, and I told him that once you found gluten-free bread that you liked, everything else was easy. I'm thinking that at some point he might try it just for weight loss, which may lead him to figure out if it helps his stomach. I'm hosting Christmas Eve this year, which will be 100% gluten-free. I'm using that meal/occasion as an outreach to all those potential celiacs/gluten-intolerants in my family to show them that they can still have bread, pie, cake and cookies if they want to just try the gluten-free diet.

Well, as you can see, I also have a persistent case of the on-and-on-and-on's. :lol:

I just love it when new people come and everything all of a sudden makes sense for them.

Nancy

spunky Contributor

Thank you for sharing all of that. I'm glad you finally found the answer. I am self-diagnosed too, and I don't really want any doctor's diagnosis or assessment of the situation. I'm feeling better and better all the time, now, almost 9 whole months totally gluten free. It's a sorry state the way doctors can't seem to do anything but steer people in the wrong direction on this and get them all medicated with dangerous drugs that do absolutely nothing for a person's health.

Thank goodness for the internet. Knowledge is power. We all have to heal ourselves, apparently!

Guest nini

welcome to the board! I'm so glad you found the strength to dx yourself, I wasn't that brave... when I first suspected celiac and went gluten-free I let my ob/gyn talk me out of it... took another almost 4 years before I was accurately dx'ed and by then I was almost dying... I have also lost faith in the medical community and prefer to deal with alternative health care practitioners. My current medical dr. doesn't do diddly squat for me! But she is supportive of my dx and making sure I stay gluten-free, and monitoring my health so I'll keep her for now.


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



Celiac.com Sponsor (A8-M):



Guest ~jules~

Welcome to the board. :D Many of us have walked down that path of confusion with celiac, I'm glad you figured it all out, and your response to the diet has given you some answers also. I really consider myself lucky that I only suffered for about 2 years. When I got it I got it bad though, I went from almost 140 lbs, to 110 lbs in 3 weeks, and had gi issues every day. I kept up with the doctors, only giving in once to stay home and suffer for a few months. With persistence I finally got my dx. Good luck to you, if you need anything the board is always good about helping out with whatever you need.. Julie

Looking for answers Contributor

It's so great that you took your health into your own hands . .and look, you got your answers. Good for you. I hope for your swift recovery!

georgie Enthusiast

Thanks for sharing the story. It was certainly an eye opener. And I thought only Hashis was hard to dx :o Why do Celiacs have to change m/up, and shampoos ?

Anne AMP Apprentice
Thanks for sharing the story. It was certainly an eye opener. And I thought only Hashis was hard to dx :o Why do Celiacs have to change m/up, and shampoos ?

Don't know. Could it be the rash associated with celiac disease or does it actually cause GI symptoms?

Robina Contributor
Thanks for sharing the story. It was certainly an eye opener. And I thought only Hashis was hard to dx :o Why do Celiacs have to change m/up, and shampoos ?

Well for me... I had always had this weird skin and scalp sensitivity... I would get really itchy bumps randomly on my head and my face... never linked it to celiac's... but after I changed my diet I had read on here somewhere that since gluten can be absorbed through the skin... and since it causes an autoimmune reaction (not just a digestion issue) and is linked with DH... I decided to change a few of my products to see what happened... well my scalp stopped itching (the hair shed also seemed to die down a little) and I stopped breaking out... so... I figured I was having a reaction to the gluten in my personal care products and switched everything over...

bradensmom14 Newbie

Was wondering if anyone knew..do you have to test positive for allergy to have celiac disease. Curious because I've heard it's often misdiagnosed as milk allergy or reflux in children and my son has both but according to allergy test was negative for any allergies accept milk and soy.

nikki-uk Enthusiast
.do you have to test positive for allergy to have celiac disease.

First of all welcome to the boards!!

My son was recently diagnosed with celiac disease but he has no allergies

Coeliac disease is an intolerance as opposed to an allergy.

That's not to say alot of people here don't suffer from both but they are not mutually exclusive. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,248
    • Most Online (within 30 mins)
      7,748

    Stephen of the West
    Newest Member
    Stephen of the West
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Zuma888
    • knitty kitty
      You have one gene for Celiac.  You have a second autoimmune disease, Hashimoto's thyroiditis, which is frequently found at a higher rate with Celiac.  HLA genes carry autoimmune disease genes like Celiac and Hashimoto's and diabetes and others.   You have Celiac symptoms of reacting after gluten.  You said "I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches)."  And your anti-thyroid antibodies increase after gluten exposure.  While tTg IgA does not directly attack the thyroid, gluten exposure does trigger the  immune system to produce antibodies against the thyroid in genetically predisposed individuals.  You did not eat sufficient gluten (10 grams of gluten per day for two weeks minimum) to raise the autoimmune antibodies to the point they can be measured in the blood, so your blood tests may well be inaccurate.  You could choose to continue the gluten challenge of 10 grams a day for at least two weeks and get retested.   At the very least, you know that gluten is harmful to your thyroid, and because you are genetically predisposed to Celiac disease, a strict gluten free diet would be beneficial for your overall health.  
    • Zuma888
      Thanks @Scott Adams! I guess my question now is: do the celiacs who can get away with regular contamination without villi damage as you mentioned have to be strict about cross-contamination ? 
    • Zuma888
      Thank you very much @knitty kitty! I'm glad you brought up the point about histamine. I have been taking an antihistamine after meals where I don't feel so good and never knew why it helped so much. At first I thought I might have a food allergy, but I recently did a food allergy test and I actually have ZERO food allergies. Regarding your last point about the stages of grief, are you saying it's likely that I have celiac? I have Hashimoto's BTW and I know for sure that gluten causes an autoimmune response to my thyroid as my anti-TPO and anti-Tg go up and my throat feels swollen. Could the symptoms be due to that autoimmune response?
    • knitty kitty
      @Zuma888, The antibodies produced in response to gluten are made in the intestines.  When the body is provoked sufficiently, the antibodies overflow out of the intestines and into the blood stream.  Once in the blood stream, the antibodies can be measured with tTg IgA tests.  Three grams of gluten per day for two weeks minimum is enough gluten to make you feel the symptoms of having been glutened, but the antibodies are not in sufficient quantity to be measured in the blood. Ten grams of gluten per day for a minimum of two weeks is required to get the anti gluten antibodies at a high enough level in the blood stream to be measured by tTg IgA tests. So, no, occasional cross contamination or (heaven forbid) intentional cheat days will not be sufficient for tTg IgA testing.  You will still be making antibodies which will still be causing inflammation and damage to the intestines and body.  Histamine is released as part of the immune response to gluten.  High histamine levels lead to food sensitivities, brain fog, and body aches.   The damage done to the gastrointestinal tract affects the absorption of essential vitamins and minerals.  Malabsorption of fats can cause changes in stools.  Insufficient absorption of vitamins and minerals can cause damage to other organs like the thyroid if it can't get enough Selenium, iodine, iron, zinc, and Thiamine.  Brain fog and fatigue can be caused by low Thiamine and other B Complex vitamins.  Vitamin D is needed to regulate the immune system.  One gene is all that's needed to develop Celiac disease.  I know a Celiac diagnosis is a change that can be difficult to get your head around.  Many people go through the five stages of grief.  One stage is "bargaining".  Sounds like you're stuck there.  Every little cheat counts to your detriment.  But sticking to a gluten free diet, makes every meal a success.   Read the comments below the article... Best wishes!  Keep us posted on your progress!
×
×
  • Create New...