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Newly diagnosed and overwhelmed

Peter-H

By Peter-H
in Coping with Celiac Disease

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Peter-H Newbie
Peter-H
Posted
(edited)

Dear all,

I was recently informed buy my doctor (in Finland) that I have celiac disease. What's funny is that another doctor who did some genetic testing informed me that I had the risk of celiac as I had the following genes: HLA-DQ2 and HLA-DQ8. He advised that I eat a gluten-free diet and this has helped a lot with gastro-intestinal problems/pain. In fact, I'm now on very restricted vegan diet and prescribed a lot of supplements by my doctors.

Anyway, the reason that I am posting here is that over the past 8 years I have had some rather nasty health problems. These started with chronic pain in my right leg in particular, but along the way I have had many other health problems including repeated bouts of pneumonia, vitamin and mineral deficiencies despite a healthy diet/anaemia, repeated ulcers, and the development of intolerances to many foods including dairy products, tomato, onion/leek/etc., sweet potato, zucchini/squash/etc. and quite a few other foods, and several bones that have broken too easily (2 x ankle, wrist and clavicle). Also, I have lost the ability to fight off even mild illnesses, as I have a crazy autoimmune response. 

Do any other people on here have similar experiences? Have you found that any other health problems improved after you've been diagnosed with coeliac disease?

Thank you for any help/advice you can offer.

Best wishes,
Peter

 

Edited by Peter_H
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GFinDC Veteran
GFinDC
Posted

Hi Peter,

Welcome to the forum! :)

Malabsorption is a classic sign of celiac disease.  The damage done to the small intestine can make it hard to absorb nutrients.  So we often are low on vitamins and minerals when diagnosed.  This vitamin/mineral deficit can cause many problems in our bodies.  Broken bones are one of the problems, fatigue, GI upset, bloating, pain, joint problems, skin rashes, hair loss etc plus many more symptoms are possible with celiac disease.

https://www.sciencedaily.com/releases/2019/06/190624111608.htm

Calcium is one mineral that can be low, and also boron, iron, zinc, selenium, and copper.  B-vitamins and Vitamin D are also possible issues.

 I suggest you go off the vegan diet and resume eating meat if possible.  Our bodies need lots of protein to heal and maintain themselves.  Plus the vegan diet is low in B-12.

A good way to start the gluten-free diet is to stick with whole foods you cook yourself.  Things like meats, veggies, nuts, eggs, and fruit are good and good for you.  Gluten is any food with wheat, rye, barley.  Other foods to avoid are dairy, and oats, at least for a few months.

Also it can help to avoid sugar and carbs (rice, potatoes) for a while.

It may take a while for you to recover, but after a few months you should begin healing enough to notice a positive difference.  Unfortunately sometimes the healing process seems to go forward and back alternately.  But there should be a trend towards improvement.  I suggest you write down your symptoms now and how you feel so you can compare in a month.  It's helpful to review progress.

Some of your food intolerances may go away in time, and some may stay.  We are all different in that respect.

Peter-H Newbie
Peter-H
Posted
  • Author
(edited)

Thank you GFinDC,

It's great to get such clear advice from knowledgeable people. I'm amazed by how little the Dr could say except that gluten is a no no. I've been vegetarian my whole life (vegan has been forced on me by the stomach problems), but will definitely consider finding high protein foods...maybe adding eggs too!

I get vitamin B shots (Neurobion) every month, which has been a big help with maintaining the B12 levels.

I'll definitely begin a diary too. It'll help with my journey, I'm sure.

Thank you again. ?

Edited by Peter_H

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