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Greetings! Off The Wall Questions
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      Hello everyone! I am so pleasantly surprised by the Celiac community, Everyone seems so helpful and I am very excited to (hopefully) be able to join this community. I was diagnosed with Celiac Disease yesterday and have been doing research all night. I am very overwhelmed right now but luckily I found this forum which has been a great help. Most of the questions I had were very clearly answered here already. :)

 

      My wife is amazing. When she found out what was going on with me, and how sensitive of a disease this can be, she immediately started getting rid of every gluten product in the whole house and said from now on our house is gluten free. She has been going through our fridge and pantry for the last 5 hours looking up information on her tablet.

 

I want to give as much information as possible, but will do so at the end of the questions so it can be skipped if its not important to the questions.

 

    Questions:  Is going completely gluten free ok for someone without celiac disease? Could someone lose their tolerance to gluten and develop celiac disease? My wife is 3 months pregnant, should she not make a drastic change to her diet while pregnant? (we will ask her doctor too, but I like to get multiple opinions or sources for facts).

 

 

*side question, my sister was a vegetarian when she was young. (10-20 years old) She got pretty sick from not getting enough protein. Is there anything like this that can happen with celiac disease? Should we get supplements of some kind?

 

 

Also, I have a 4 year old son who I am worried about. Could he have celiac disease at such an early age? He constantly has diarrhea, and gets a lot of tummy aches. The doctors medicines never seem to help for more than a few days. I'd like to try the least invasive things possible to get his problems fixed.

 

Now the information.

I am 27 male.

My wife is 24 years old. 3 months pregnant. She is mildly lactose intolerant.

my son is 4 and he has down's syndrome.

none of us have any known medical issues aside from what I listed.

 

I really just want to look out for my wife, son, and unborn child. I want them to be healthy and happy.

 

Thank you guys for taking the time to read this. Any advice is greatly appreciated from the bottom of my heart.

 

 

 

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Your son should be tested for Celiac before he starts a gluten free diet.

 

Non-Celiacs removing gluten from the diet only to discover that ingesting gluten DOES give them problems when later trying to eat it does happen.

 

A gluten free diet can be healthy (or unhealthy) on an individuals food choices.  Most of gluten-free diet changes can cause a loss of fiber.  This would be the main concern especially during pregnancy.  A gluten free daily vitamin supplement is a good idea.

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Protein shouldn't be a problem. Plain meat (beef, bison, pork, poultry, and fish) are all gluten-free. You just can't have the stuff that is breaded or seasoned. Fiber shouldn't be a problem. Plain veggies are full of fiber, and so are nuts (Buy Planter's nuts - some other brands process gluten items on the same lines, so are not safe.)

 

Sweet potatoes are a staple in my house because they are SO full of vitamins. The only thing I can think that might present a nutritional challenge is that you will no longer be eating vitamin fortified bread. gluten-free breads can taste pretty darned good (Udi's Multigrain, Canyou Bakehouse), but they have zero nutritional value. So maybe a good gluten-free vitamin supplement would be in order. (Either that, or you can eat LOTS of sweet potatoes like I do.)

 

Make sure that when you are purging your house you don't forget the condiments. They are all contaminated by double dipped knives. You'll need a new toaster, and to replace wooden spoons, cutting boards, strainers, and any scratched plastics or teflon pans.

 

And then you need to learn how to read labels. Some brands can be trusted to label barley (Kraft, Con-Agra), while other companies only do the legal minimum. They HAVE to tell you there's wheat, but they don't have to mention barley (or rye).

 

You will become expert at calling or emailing food companies, and this is important: DRUG COMPANIES. You would be surprised at how many of us were so scrupulous about our kitchens but forgot that our medications and supplements might contain gluten too.

 

Cutting out gluten can NOT cause celiac disease. It WILL though, if you do it right and don't rush out and buy gluten-free substitutes, result in a much healthier diet. Think whole foods. Your family will be ingesting less artificial flavors, preservatives, and chemicals.

 

And yes, your son should be tested before going gluten-free. Celiac runs in families, and if you have it, the odds (based on the symptoms he shows) are that he either has it, or is at the very least, gluten intolerant.

 

Ask as many questions as you can think of. Be prepared for your whole family to go through gluten withdrawal (headaches, mood swings, raging hunger) for a week or two. After that you should all start feeling better, and given time, you will start feeling a LOT better.

 

And welcome to the forum. :)

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You ask about supplements.  Many celiacs, due to failure to absorb nutrients, develop specific nutritional deficiences.  Common ones are Vits. B12 and D and iron/ferritin although they should all be checked.  You should have your GP run a nutrient panel for you and then supplement accordingly.  If you do have deficiencies you will need a stronger strength than that found in regular multivitamins and minerals (although I always take a multimineral anyway for all the trace minerals.)

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Is going completely gluten free ok for someone without celiac disease? Could someone lose their tolerance to gluten and develop celiac disease?

The gluten-free diet is okay for anybody. If you are genetically prone to celiac disease, and it is triggered, you will have it for life. About 30% of the population have the genes. If you go off gluten, and then have issues when you reintroduce it, it means you always did have a problem, but had no noticeable symptoms.

Fiber is a concern. Indeed, the lobbyists opposing the gluten-free diet and advocating wheat consumption mention it often. But there are other sources of dietary fiber than wheat. Flax seed is just one example.

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      Hello everyone! I am so pleasantly surprised by the Celiac community, Everyone seems so helpful and I am very excited to (hopefully) be able to join this community. I was diagnosed with Celiac Disease yesterday and have been doing research all night. I am very overwhelmed right now but luckily I found this forum which has been a great help. Most of the questions I had were very clearly answered here already. :)

 

      My wife is amazing. When she found out what was going on with me, and how sensitive of a disease this can be, she immediately started getting rid of every gluten product in the whole house and said from now on our house is gluten free. She has been going through our fridge and pantry for the last 5 hours looking up information on her tablet.

 

I want to give as much information as possible, but will do so at the end of the questions so it can be skipped if its not important to the questions.

 

    Questions:  Is going completely gluten free ok for someone without celiac disease? Could someone lose their tolerance to gluten and develop celiac disease? My wife is 3 months pregnant, should she not make a drastic change to her diet while pregnant? (we will ask her doctor too, but I like to get multiple opinions or sources for facts).

 

****Not eating gluten will not cause celiac disease.  If you don't have it, then going on and off gluten should have no effect.****

 

****The bun in the oven lady should of course eat a healthy diet.  For a new celiac like yourself, eat whole foods is the way to go and is very healthy.  Eating whole foods eliminates all the filers food colorings, preservatives, stabilizers, emulsifiers, artificial sweetners, GMO's, and mind control drugs they put in modern foods to sell them.  Kidding about the mind control drugs, but they do put all that other stuff in processed foods.  Basically many processed foods are effectively little chemical company samplers.  Being able to tolerate that stuff in our food doesn't mean it is good for us.  They only add that stuff to foods to make more money on it.  Not to make us healthier.   Changing her diet to a healthy whole foods diet is a great idea IMHO.  Try to avoid any processed foods unless they are organic and marked gluten-free.  Instead look for foods in their natural state, or food with 3 or fewer ingredients.****

 

 

*side question, my sister was a vegetarian when she was young. (10-20 years old) She got pretty sick from not getting enough protein. Is there anything like this that can happen with celiac disease? Should we get supplements of some kind?

 

****Eating meat is good for a celiac.  The damage to the intestinal villi makes it hard to absorb some nutrient, including the fat soluble ones.  Many people take extra vitamin D and B vitamins.  But we can have deficiencies in any vitamin or mineral.  Your doctor can test you for vitamin levels and let you know if there any that need attention.  After you are on the gluten-free diet a while and begin healing, your ability to absorb nutrients should improve.****

 

 

Also, I have a 4 year old son who I am worried about. Could he have celiac disease at such an early age? He constantly has diarrhea, and gets a lot of tummy aches. The doctors medicines never seem to help for more than a few days. I'd like to try the least invasive things possible to get his problems fixed.

 

****Infants can have celiac disease at a young age.  They call it "failure to thrive" when a child doesn't grow due to some cause.  In the past children were diagnosed as failure to thrive when they had distended stomachs and didn't grow.  This was a typical diagnosis of celiac children.  Antibody testing children is somewhat iffy, so a dietary trial would be a good idea if the tests don't show anything.****

 

 

Now the information.

I am 27 male.

My wife is 24 years old. 3 months pregnant. She is mildly lactose intolerant.

my son is 4 and he has down's syndrome.

none of us have any known medical issues aside from what I listed.

 

I really just want to look out for my wife, son, and unborn child. I want them to be healthy and happy.

 

Thank you guys for taking the time to read this. Any advice is greatly appreciated from the bottom of my heart.

 

Celiac disease is an autoimmune disease.  People with celiac have a higher chance of developing other autoimmune diseases.  You may find that you grandparents or aunt/uncles had autoimmune diseases.

 

And welcome to the forum! :)

 

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.

 

The gluten expert panel with Dr Tom OBryan.

Helpful threads:

FAQ Celiac com

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

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

What's For Breakfast Today?

http://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/

 

Dessert thread

http://www.celiac.com/gluten-free/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes

http://www.celiac.com/gluten-free/topic/56641-easy-yummy-bread-in-minutes/

How bad is cheating?

http://www.celiac.com/gluten-free/topic/94443-how-bad-is-cheating-on-the-gluten-free-diet-periodically/

Short temper thread

http://www.celiac.com/gluten-free/topic/34917-anger-quick-temper-depression/

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

http://www.celiac.com/gluten-free/topic/97786-thread-for-gluten-free-dairy-soy-corn-and-nightshade-free-recipes/

Super Easy Meal Ideas Anyone?

http://www.celiac.com/gluten-free/topic/97027-super-easy-meal-ideas-anyone/

 

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Wow! a big thank you to everyone who helped me out there. That is a lot of information and all very helpful. I really appreciate it guys.

 

I can't believe how sensative of a disease this is. Let me get this straight, if I cut a piece of wheat bread on a plastic cutting board, wipe the crumbs off (without any cleaner) then cut some chicken on that same board, cook the chicken and eat it... I could get sick?

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Wow! a big thank you to everyone who helped me out there. That is a lot of information and all very helpful. I really appreciate it guys.

 

I can't believe how sensative of a disease this is. Let me get this straight, if I cut a piece of wheat bread on a plastic cutting board, wipe the crumbs off (without any cleaner) then cut some chicken on that same board, cook the chicken and eat it... I could get sick?

 

Yep!

 

 

Not sure if this will work. It shows how small an amount causes reactions in most people.  Some people it is even a smaller amount.

 

https://www.facebook.com/#!/photo.php?fbid=370935859610336&set=a.200039736699950.41991.197809513589639&type=1&theater

 

"A separate toaster should be used for gluten-free products. Even a crumb is a source of gluten that can cause harm to a person with celiac disease.
A safe limit of gluten intake for most celiacs is less than 100mg per day, though some do react with as little as 10mg."
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Hi Chase's Dad,

 

Yep, small amounts can get you.  Celiac is autoimmune.  Think about how small germs are.  Have you ever seen one?  Yet your body detects and reacts to them even if they are too small to be seen.  Celiac disease is the same response, the immune system attacks the gluten and the tissues it is on.  If your immune system couldn't detect and react to very small amounts of something you wouldn't live very long.  We are all surrounded by bacteria and germs all day long in our daily lives.  But the immune system is right on top of taking them out before we even know they are around.

 

It seems like people get more sensitive to gluten exposure after the have been off it for awhile.  What doesn't bother a person at first may cause a big reaction a few weeks later.  The less gluten you have in your diet the faster your immune system will relax and stop making antibodies, and the faster you will heal.  The first few months gluten-free can be kind of back and forth between feeling better and feeling worse.  Sometimes with no apparent dietetary cause of the symptoms.  It can take some time for things to settle down and to learn how to avoid gluten in your diet.  But after a while it gets much easier to avoid gluten.  Especially if you eat whole foods mostly and don't eat in restaraunts.

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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
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