Jump to content

  • 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):

Lightbulb Moment

Scunner

Recommended Posts

Scunner Newbie
Scunner
Posted

I have suffered from stomach problems for at least eight years and I'm 28 now. I went to the doctor about four years ago and was told to just eat healthily (I wasn't particularly unhealthy at the time but just kinda felt like I was wasting the doctors time).

My stomach and bathroom issues cause me to miss days out, cut short walks and generally feel pretty nervous about any time I need to be somewhere! In July, I went on holiday to Turkey. For the whole week we were there, I was unable to leave the hotel for fear of being too far away from a bathroom. Then, last week, I went out for dinner. Before the plates had even been cleared I had to go to the toilet and practically dragged my friends back home once I returned to the table.

I made a doctors appointment, which I went to today. I took a list of symptoms I had and assumed it must be something like IBS. I decided I would just list every wee niggly thing that bothers me, including things that I thought had nothing to do with my stomach problems, like tiredness, black circles under my eyes, always looking pale and drawn, bruising easily.

I am getting tested for celiacs tomorrow by a blood test but after reading over this site, I am bizarrely feeling quite excited! I can't believe there is an illness which seems to tick all the boxes for my symptoms, including things I never even thought to mention in my list to the doctor, like hair falling out easily, muscle cramps in my legs for days at a time and sore bones and joints...by the way, sometimes my skin feels sore, like if I touch my shoulders it feels bruised, is this something anyone else gets?

So yeah, the reason for my mild excitement is the thought that I might actually have an illness that I can control and I will finally get my life back. We are planning a trip to new York for five days in january and I have been really stressed that I would ruin it with my excessive toilet dependence,but now maybe I will be in a better place!

The crazy thing? My dad was diagnosed with Celiacs last year and has been gluten free ever since but he lives in another area of the UK so I don't see him more than every few months and didn't realise the symptoms extended past a rash! Too think if I had been a more attentive daughter this possible diagnosis for me could have been brought to my attention sooner...that'll teach me!

Anyway, I have been eating gluten as normal recently, since I had no reason not to. But today as an extra precaution for the bloods, I ate some bread and then a plate of pasta.

I'm pretty sure I'm going to go gluten free after tomorrow's test anyway and see if it helps, so thanks in advance for all the great tips on this site :)

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi ,

Really all your first degree relatives should be tested for celiac. The genes for celiac are hereditary so any family could have it. I think you have been gluten-free on and off right? So your tests have a good chance of being negative. But at least they are a baseline to compare tests with later, say in 6 months or so.

You are right, going gluten-free regardless of the test results is the smart thing to do. Our bodies are a very good diagnostic tool . If'n it makes you sick, don't eat it is a simple way to look at it.

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 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

eatmeat4good Enthusiast
eatmeat4good
Posted

I am very happy for you!

I, too, remember my "light bulb moment" on this very site 2 years ago.

I had been sick with all the boxes you ticked and it was a wonderful feeling to find out that there was actually a disease that matched all the symptoms! That meant healing was possible!

I am thrilled for you that you will be watching all of those symptoms go away and you will get your life back. I know you are not yet diagnosed...but I'm with you on this one!

You will be!

And if you are not, well, you still know what to do!

Welcome to the site and to your new life!

I feel excited for you!

kittty Contributor
kittty
Posted

It feels good to just know. It feels even better once those horrible inconveniences start to disappear. Sorry for the TMI, but after a couple of months or so of being gluten free I could go to the bathroom like a normal person again, and I felt like celebrating. You'll be there soon!

I still get that tender-skin feeling sometimes, but not nearly as much. It used to be worse around the shoulder blades, and sometimes felt like a burning sensation.

You might want to hold off going gluten free until your doctor is done with all the tests. You might need the endoscopy too, so you should keep gluten in your system until you know for sure that you don't need any more tests.

nvsmom Community Regular
nvsmom
Posted

Good luck on your tests! You seem to be approaching this from a very healthy angle so I have no doubts you'll manage wonderfully on a gluten-free diet. :)

I hope you feel well soon.

squirmingitch Veteran
squirmingitch
Posted

Hooray for you! YES! I had the same feeling when I found out too. I was elated that I don't have to have surgery for this disease. I don't have to take meds for this disease. Meds which always have some downside to them. Being gluten free isn't bad --- it takes a little getting used to but it's not bad at all. I'm at the point now where I actually cackle to myself in the grocery store when I bypass the doughnut, pastry, cake & fresh bread aisle --- saves me a whole lot of time --- and $$$$ too! I love whizzing down the flour, cake mix aisle & just making a short stop to grab the sugar. My time spent in the grocery store diminished greatly & along with that the $$$ spent on the food bill diminished greatly in spite of having to order online things like nuts & gluten-free flours.

Life is GOOD!smile.gif

IrishHeart Veteran
IrishHeart
Posted

I am bizarrely feeling quite excited! I can't believe there is an illness which seems to tick all the boxes for my symptoms, including things I never even thought to mention in my list to the doctor, like hair falling out easily, muscle cramps in my legs for days at a time and sore bones and joints...by the way, sometimes my skin feels sore, like if I touch my shoulders it feels bruised, is this something anyone else gets?

Yes. I had all those symptoms you listed.

And your symptoms, plus your Dad being a celiac? Speaks volumes. Do not blame yourself for "not paying attention"---your dad's doctor should have told his family to be tested immediately. This is a genetic, hereditary disease.

I think you are one of us, hon. Welcome!... and just know this---you are going to be okay. Like you, I was so happy & excited to know I had Celiac---it was the answer to a lifetime of symptoms and a horrible decline in my health that would have killed me for sure.

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

Celiac.com Sponsor (A8-M):


Scunner Newbie
Scunner
Posted
  • Author

Thanks for all the kind words! I've been reading more of the forum and it's so useful :)

I went for my blood test yesterday, was about to reverse out the driveway when my partner called me and said she had left work early and would be there in a couple of minutes, so she could take me to the docs and I wouldn't need to drive after giving blood. Since I'd waited over half an hour for my appointment the day before I thought this would be fine, but when I turned up at the doctors four minutes late I got told the nurse I was there to see had left! Serves me right for being late I suppose, but I just couldn't believe she couldn't wait four minutes for me.

Anyway, looking at it as a positive... Gives me a few more days to OD on gluten :D

Thanks for the info about the biopsy and endoscopy, if its the sensible thing to do then I think I will keep gluten in my diet 'til then. If I do have this, I expect to see quite a bit of damage, I've been feeling ill for at least eight years and have quite a high gluten diet... I started' healthy eating' last year and so made an effort to eat cereal for breakfast and lots of pasta and sandwiches. That's probably why I've been worse recently lol.

IrishHeart Veteran
IrishHeart
Posted

oh yes, I was advised to eat MORE WHOLE GRAINS back in 2009 :rolleyes: for "IBS" and "Adrenal fatigue" and I loaded up on whole wheat, rye, barley, oats....and as my hair fell out, my brain stopped working, my muscles lost their tone and mass and I dropped 90 lbs. I thought "well, this can't be right....."

Keep us posted!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...