Hi From Australia - And Im Not Coping...

[Satobsat]

Hi everyone,

 

Sorry if this long winded post bores you but in a way its a venting mechanism for me so here it goes..

 

Im 40 yrs of age, awesome wife and 2 kids (also have a dog which completes the cliché lol ) and ive been diagnosed with celiac as well as type 1 diabetes.. To say that 2013 has been a year of turmoil would be an understatement...

 

It was in February of this year that I was diagnosed with both type 1 and celiac and im afraid that im not coping well with it. Before diagnosis, I was losing weight (down to 55kgs or 120lbs) and felt like death. Im back to 60kgs and cant seem to put any more weight on. I have been gluten free since February and I still feel the same symptoms of not being able to put on weight, fatigue and random gut pains.. I think the worst symptom that no doctor can help me with is the skin pain I am experiencing.. Nope, there are no blisters (dermatitis herpetiformis) just hurts to touch and itchy at night.. if I could get rid of the skin pain I would be very happy indeed.. No-one knows why I have it..

 

Im just upset that its been 6 months since diagnosis and ive been strictly gluten free yet I still feel fatigue and nowhere near 100%.. How long does this damn healing take??

 

What makes matters worse is that it looks like my son (who has just had the blood test) might be celiac as well and I feel terribly for him. He is not gluten free yet so the biopsy will confirm or deny that he has it.

 

Anyways, just saying hello and continuing my research so I can start to feel better again and so I can take care of my son who im sure will follow his dad into this disease

 

 

[GFinDC]

Hi S,

Welcome to the forum!   We hope you will like it here.

You have 2 newly diagnosed conditions to adjust too, and that can take a bit of time.  Just getting used to eating gluten-free can take quite a while.  Healing could take a couple years, although that is just a rough guess, not a set number.  Everyone is different, or rather individual.  Some people will much heal faster and some slower.  Our immune systems learn to attack the villi lining the gut and it doesn't stop right away.  So healing is a battle until the immune system settles down.

Eating mostly meats and veggies is a good way to start the gluten-free diet.  Avoiding processed foods is helpful.  You should have your vitamin/mineral levels tested to rule out deficiencies.  It's harder to heal without proper nutrient levels in your body.  Since the gut damage makes absorbing nutrients difficult, it is common for people have low levels on some of them at first.

DH (dermatitis herpetiformis) doesn't always start out as the full blown condition.  It can start out slowly with more minor symptoms and then progress to the blister stage later.  You might instead be low on B-vitamins which affect the nerves and that could cause symptoms of pain or itchiness.

The simpler and cleaner your diet is to start with, the simpler it is to adjust.  Processed foods have so many ingredients it can be tricky to identify which of them might be causing symptoms.  I suggest eating only foods with 3 ingredients or fewer for a few months.

Branching out and widening your diet choices is ok, but it is good to wait until you are sure of how you body is healing and understand it's food reactions first.  Baby steps are good for a new person.  Slow and steady.  The turtle wins the race and all those kind of cautious suggestions do apply for newbies.

Gluten-free processed foods tend to be higher in calories and lower in nutrition so they aren't a good choice for those reasons, at least at first.  I eat Mission brand corn tortillas often instead of gluten-free bread.   They are cheaper and work.  In Aussie they make a product called Corn Thins that are kind of like round crackers.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
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 gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

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

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

[come dance with me]

Hello fellow Aussie

 

It does take a little while to learn about it, I won't give advice because I don't really know anything about diabetes.  My daughter (now 10) was diagnosed at 7 and still on occasion I make mistakes, but we are mostly fine.

[cyclinglady]

Great advice given.  Just wanted to let you know that it truly does take time to heal.  It's only been five months or so of being gluten-free for me and slowly I'm feeling better.   

 

My husband has been gluten-free for 12 years, so the conversion for me has been relatively easy.  Our daughter has not yet been tested, but she's living in a gluten-free household and only gets gluten outside of the house.  Though you feel bad about the possibility of your son also having celiac disease, it's not too terrible -- he will find out before any major damage is done (like developing type 1 diabetes) and he'll heal faster than you!  My daughter is also "doomed" since autoimmune thyroiditis runs strongly on both my side and my husband's side of the family and both of us can't have gluten.  What are her odds?  

 

You might have developed some food intolerances that you never knew until you went on the gluten-free diet.  You can search this forum for lots of advice on how to identify them.  

 

Welcome and take your dog for a walk -- you'll feel much better!

 

Mom to one great kid, supportive hubby and an awesome black lab!

[Satobsat]

Thanks for the welcome and advice. Helps to know that there are lots of people who have gone through this and come out healthy on the other side. Actually did a few things around the house and have just stopped due to fatigue but feel I have accomplished something. I think half the battle is in the mind so I have to get the chin up and soldier on!

 

Thanks again!

[cyclinglady]

I have become the "Queen of Breaks".  My anemia was so bad (low hemoglobin) that I had a hard time catching my breath while talking.  The anemia has finally been resolved (am absorbing iron) and my thyroid has finally calmed down (was hyper and hypo) so the fatigue is improving.  I thought I was finally getting better when I fractured a vertebrae doing nothing.  That really set me back physically and emotionally!  For the first time in my life I faced the possibility of not being able to do all the physical things that I wanted to do (like run or ride my bike).  I always knew that I'd end up just swimming but not until my 80's.  

 

I finally realized that I can't do it all, so I've cut out lots of volunteer work and have learned to say no!  But, I'm not going to give up on my bike just yet (it's calling me from the garage and it's feeling very neglected......)  My bone scan is in three days and I"m hoping for the best.

 

I think I'm addicted to this forum, but in a good way.  

 

Yesterday, I went to a party at a local bar/restaurant and some friends ordered plates of onion rings and fries to share.  They couldn't believe that my husband and I couldn't eat them.  I felt a little hurt when they scoffed, but I realized that they are just ignorant.  But what can you do?  As you said, "Just soldier on!"

[Satobsat]

Went to a gastro for my son yesterday and he says 95% chance based on bloods alone that he is celiac biopsy booked in 2 weeks time. Hell of a year with the type 1 diabetes, celiac and now my son... daughter to check next

 

sigh.

[AlwaysLearning]

I continued to feel worse after I went gluten free as well, and it took another few months for me to figure out that it was vitamin deficiencies that were causing my fatigue and abdominal pain, though I never did get neuropathies on the level you describe.

Even if they aren't the cause of your symptoms, it is very likely that you are low on something. Most recently-diagnosed celiac sufferers are, and I have to wonder why doctors don't make deficiency testing the next step after the endoscopy. And they are probably the easiest thing to look for and find (just a blood test) so a great first step in trying to figure out the cause of your pains.

I can say that just starting to get my deficiencies fixed made huge improvements in how I felt very quickly, so if that is the problem, then you can be hopeful to be feeling better very soon, even if it takes much longer to actually complete the process of getting them to ideal levels.

If the whole family goes gluten free, that is probably good news for you (though tougher for the children). But it could mean that you can remove gluten completely from your home, which makes everything soooooo much easier than trying to do a shared kitchen. 

[GFinDC]

Hi S,

 

I am sorry about the kiddo.  Celiac does run in families so it's not unusual for offspring to have it also.  But the good thing is that a gluten-free diet can be a much healthier diet than most people would eat.  It's a good idea to avoid processed foods when eating gluten-free.  Instead stick with whole foods.  A kid starting out on whole foods that are gluten-free is going to avoid a lot of chemicals in their diet that might not be good for them.  Food preservatives, food colorings, etc are not really food anyway, but additives to sell more food / make more profit.

 

The Paleo diet might work well for you.  It concentrates on meats, veggies, fruit and nuts. instead of grains.  Protein is helpful for diabetics as it lowers the glycemic index of a meal.  So some meat with  a meal can help.

[1desperateladysaved]

Went to a gastro for my son yesterday and he says 95% chance based on bloods alone that he is celiac biopsy booked in 2 weeks time. Hell of a year with the type 1 diabetes, celiac and now my son... daughter to check next

 

sigh.

I know this seems like a hard thing for your child to have celiac.  It is good to find out early, develop habits of watching out for gluten, and not have years of damage.  I suffered 30+ years with celiac.  I have been gluten free for 18 months and I tell you it was worth it.  I am so glad for the day I found out. Though at the time, I also felt deep grief.  First off it was a big relief that it was not all in my head.  I had a real problem, which diet can be used to heal!  I didn't have to worry about drug side effects.   Now, I am very glad because my fatigue and brain fog are gone!  It was hard at first, but now every struggle in it seems worth it!

 

Best wishes to you on your journey,

 

Get Well,

 

D