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Gluten Free: Day 1

mrsmuffin

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mrsmuffin Newbie
mrsmuffin
Posted

Hello all! I was diagnosed with Celiac and have started my new way of living. I am pretty much asymptomatic, and was diagnosed through biopsy because I went to have a colonoscopy and upper endoscopy due to severe anemia. I really believed that my anemia was due to heavy periods, but they wanted to rule out colon problems since my grandfather died from colon cancer. Thank goodness my GI doctor wanted to do the upper endoscopy also. He told me yesterday that he really was not expecting me to have Celiac, but that was indeed the case.

I am also planning on having my 11 year old tested as he has had digestive issues for the past few years, and I am wondering if this could be the answer to a lot of questions.

Anyway, I just wanted to introduce myself. I have already learned a lot by reading some posts, and can see that this is a very supportive community!

-Holly

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mamaw Community Regular
mamaw
Posted

Hello & Welcome to Our group...

I can say without a single doubt this gluten free lifestyle change is way better than colon cancer...Glad you found the correct path to follow. Being gluten-free is not always easy or convienent but it is all worth the learning curve to be healthy. If you have questions please ask...

squirmingitch Veteran
squirmingitch
Posted

Welcome Holly! There are great people on this board. Everyone is sooooo helpful. And BOY!, are you ever fortunate to have a doctor "in the know" or at least not obtuse to the fact that celiac disease exists. Get your son tested & don't let him go gluten free until all the testing is done with otherwise it will skew the test results.

pianoland Rookie
pianoland
Posted

You're so fortunate to have found out despite not having any symptoms. Although, I wouldn't be surprised if you start to see improvements in your health/energy in the next few months. I didn't realize how tired I was before I went gluten free.

I know it's overwhelming at first but it becomes second nature.

Raven815 Rookie
Raven815
Posted

Welcome Holly,

I am also new here and I am so thankful I found this board. They are some of the most warm and caring people I have ever come across. I believe I have DH and I was so prepared when I went to an uneducated derm just from reading about it here. I thought I knew a lot about celiac (Mom has had it for about 30 years), but I now realize that I am just scratching the surface.

Laura :P

Mateto Enthusiast
Mateto
Posted

Hello! You'll learn a lot, even some things you didn't want to know....but then later on you realise how happy you are you've learnt it!

GFinDC Veteran
GFinDC
Posted

Welcome to the site Holly (MrsMuffin),

There are some other people on the forum who don't have symptoms also. Most likley your doctor found it before symptoms developed. But there is a chance you will notice things improving as you go that you didn't realize were symptoms also. It might be a good idea to write down what you eat each day and how you feel, including mood and energy. Celiac has around 300 symptoms and they are not all digestion centric.

Here's some light reading for starters. Feel free to ask questions too. We all learned from scratch also. :)

FAQ Celiac com

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

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

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IrishHeart Veteran
IrishHeart
Posted

Hello and welcome!

May I also point you to this thread--more "light reading for you" :lol: (and so I do not bore everyone to death by writing it all it again )

Maybe something on here will help.

Best wishes to you!

IH

mrsmuffin Newbie
mrsmuffin
Posted
  • Author

Thank you all for the warm welcome! I am so happy to get any information that I can. I know that I will see improvement in ways that I didn't even realized needed improvement!

I just heard back from my son's pediatrician this morning and he was indeed biopsied last year when he had an upper endoscopy. I am glad that he does not have Celiac at this time, but I was also looking forward to a possible explanation for the issues that he has had. We will keep goign on his current plan and I will have him tested again in a few years.

Thanks again for all of the support!

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    • Mari
      Ocd making gluten fears unmanageable. Need advice

      By Mari · Posted

      I havesome of the replies to your post(which by the way is a gread piece of writing) and think that it will take lots of time and reading to decide what you are going to do. I would like to give you some practical suggestions. Your anxieties and OCD are a perfectly natural response when your body is sending signals that you have physical problems. The body does not use words it uses biochemistry and electric interactions. Celiac disease is not a killer disease so you are not going to die in the near future if you get glutened.  It can be a disabling problem unless you stay gluten free. For OCD attacks I have used spearmint or peppermint teas to relax. I also sitorlay down , relax as much as possible and review what I have been eating for the last few days and can usually identify that I have been eating too much of something and not enough of other foods that would balance my body. My body may have become too acid when it needs to be slightly alkaline. For me this means eating more vegetables and less starches and proteins. There are some websites that will list acid forming foods and alkaline forming food and many foods that are in between. Just admit that you are anxious about gluten being present in foods and anything that is used to prepare foods or even in your environment. When you eat anything that makes you anxious take a capsule of an anti-gliadin enzyme. I use a brand called GliadinX. It works in the stomach and will break down small amounts of gluten. Look up online the amount of plain water your body height and weight needs every day. Two years ago I was 5' 4" and weighed 100 lbs and needed 48 oz. every day.  Even if you can't drink the full amount if you just drink more water you will notice some improvement in your digestive system.  That's enough for tonight and it's way past my bedtime. Don't hesitate to ask more question or ask for more information.       
    • Scott Adams
      Canker sores

      By Scott Adams · Posted

      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      Canker sores

      By Jacki Espo · Posted

      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
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