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Gluten Free: Day 1


mrsmuffin

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mrsmuffin Newbie

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

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

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

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

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

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

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

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

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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    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
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    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
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      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
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