Just Diagnosed

[weekendwarrior]

Hi everyone,

I just found out this morning that I tested positive for Celiac (after being lactose intolerant for over 15 years).

I'm having a hard time processing this as I have a wife and children who are perfectly fine, and now my issue is basically being forced upon them.

I don't get digestive issues from gluten, but I get pain in all of my muscles (feels like the flu), I goto bed tired and wake up tired and my joints pop and crack to the point where they discovered Celiac while testing for RA.

I read the newbie post and that seems to be a helpful (but very overwhelming) start. Also setting in is the double worry when going out - dealing with dairy free was a challenge enough, this just multiplies that fear, because how can we goto a friends house or to a restaurant without dealing with the aftermath.

Any advice or help would be greatly appreciated - as I really don't know anyone who's dealt with this personally, so I don't have anywhere to reach out for answers.

[kareng]

Sorry I don't have time right this minute - dinner is almost ready.  But the best advice I can give you right now is to wait a few months before eating out.  Figure out what has gluten and what doesn't.  Heal some first.  Get habits at your  house started.  Take some time to process.  

[tessa25]

Initially I would recommend eating simple foods at home until your blood test numbers start improving or whatever metric you are using to determine that you're better.

But once you've gotten your blood test numbers down to normal or you've been told that your healed you can find restaurants that are good for people that need to be gluten-free at the findmeglutenfree website.

As far as eating out at other people's homes goes. What I always do is find out what they are serving, make my own and bring it with me. That way when we are all sitting down and eating it looks like I'm eating the exact same thing as everybody else. And I don't feel like I'm missing out on anything.

[cyclinglady]

Great advice given.....I would follow it.  But the good news is that as you heal, you might find that you can now eat dairy!  Yep!  Wait until you feel better and then try yogurt or hard cheeses (less lactose in those items).  Of course,  you might be lactose intolerant genetically, but let's hope not.  

[GFinDC]

Hi Weekend,

Such a big diet change can be bit daunting at first.  But in time you will get used to the changes and adapt.  It's best IMHO to stick with simple, whole foods for the first few months at least.  You need to avoid all gluten and that is easier if you aren't eating any processed foods.  You can always add those processed foods back into your diet after you have been gluten-free for 6 months or so and recovered some.   A problem with many gluten-free processed food products is they have no added vitamins and contain more sugar and empty calories than regular gluten foods.  Avoiding lots of carbs and sugar is good because it prevents bad bacteria from going crazy in your gut.  Pro-biotics are good thing to add to your daily vitamins.

So stick with whole foods, eat simple meals, avoid any restaurants and eating at friends for a while.  You may be low on some vitamins so your doctor should check that if they haven't already.  Recovery time varies but it could be up to a year or more for your gut to recover and heal.  Celiac is an immune reaction it takes very little gluten to make the immune system fire up and attack our guts.  And the immune attack can take weeks or months to subside.  That's why it is important to be extra careful at first so your system can heal.

Welcome to the forum Weekend!

[Zodi1993]

Hi Weekendwarrior, 

Ahhh now that you know you have Celiac Disease you can bet that your wife and kids will be happy to have their Dad feeling better. It will be a struggle at first but knowing is the first step. Everyone has given great advice especially  bringing your own food whenever you can. It takes the worry out of wondering if you will get sick from cross contamination. Your friends will silently thank you because you have made their life easier by wondering if you will be able to eat whatever they are serving.  

Make sure you have a Gluten Free kitchen and a space just for you. I bought my daughter bright colored knives, silverware and dishes. Just so there isn't any confusion. Throw out plastic containers and get your own cutting board. Something that can go into the dishwasher. When she is home I buy butter and things she can eat and write her name on them.  She has her own toaster and pizza pan. These steps seem like a lot but in the long run they will help with cross contamination and keep you feeling better. 

Welcome to the forum! 

[GFinDC]

Hi again WW,

Your kids should be tested for celiac disease also.  There are a couple of genes associated with celiac and they may have inherited them.  If you have brothers or sisters they also have a chance of developing celiac disease if they have the gene/s.  Having the genes doesn't mean you automatically get celiac disease, but that you have the possibility of developing it.

There are celiac disease support groups in many areas.  You might find one by Googling your city name and celiac disease.  Some hospitals have support groups or let support groups meet in their facilities.

[weekendwarrior]

Good morning everyone!

Thank you all so much for the replies. I'll admit, I'm very overwhelmed at what I'm facing, but excited to feel better.

The weird thing is (knock on wood I guess), I don't get stomach reactions to gluten, it's all muscle, joint and fatigue, which is likely why it took so long to figure out what the issue was. It also makes me wonder, how much longer I've been dealing with this (only with lesser symptoms overall).

The Mrs and I are already researching how to de-glutonize the kitchen, and still allow the kids to have their Mac and cheese and chicken nuggets and "fun kid dinners" that they ask for every now and then. While I know the adults can understand the situation and the idea of separating, I can't expect an 8 or 3 year old to do the same.

But thank you all so much for the welcomes and I'll be becoming more active in the forums as I read up and learn more about my new lifestyle.

[cyclinglady]

You can maintain a shared kitchen, it just takes planning and some rules.  My kitchen was shared for 12 years until I was diagnosed and I previously controlled the kitchen.  There is just the three of us, so two against one won.  It is nice to have a safe place to relax.   You will figure out what works best for you.  

  Our daughter was 12 when I was diagnosed.  She has tested negative so far.  But let me tell you she does not miss eating gluten at home.  She prefers a homemade gluten-free cake over bakery made cake.  Really!   She eats it at school and when visiting with friends, etc.  I send her off to friend's houses with cake mixes or some gluteny thing to eat.  Everyone is supportive.  I have learned to bake gluten-free free and freeze goodies to take to parties so hubby and I are never left out.  I pack lunches for him and co-workers are actually envious of his lunches!  Our families and friends know not to expect any gluten in our house and are fine with it.  I suggest definitely not baking with gluten flour in your kitchen, but the mac and nuggets are doable.  

Oh, I was just anemic when diagnosed and my hubby's symptoms were like having the flu.  Gut issues were not our problem and the lack of GI issues is one reason celiac disease is often overlooked.  I swear my GI must have just attended a seminar (though I never asked).  

[weekendwarrior]

4 hours ago, cyclinglady said:

You can maintain a shared kitchen, it just takes planning and some rules.  My kitchen was shared for 12 years until I was diagnosed and I previously controlled the kitchen.  There is just the three of us, so two against one won.  It is nice to have a safe place to relax.   You will figure out what works best for you.  

  Our daughter was 12 when I was diagnosed.  She has tested negative so far.  But let me tell you she does not miss eating gluten at home.  She prefers a homemade gluten-free cake over bakery made cake.  Really!   She eats it at school and when visiting with friends, etc.  I send her off to friend's houses with cake mixes or some gluteny thing to eat.  Everyone is supportive.  I have learned to bake gluten-free free and freeze goodies to take to parties so hubby and I are never left out.  I pack lunches for him and co-workers are actually envious of his lunches!  Our families and friends know not to expect any gluten in our house and are fine with it.  I suggest definitely not baking with gluten flour in your kitchen, but the mac and nuggets are doable.  

Oh, I was just anemic when diagnosed and my hubby's symptoms were like having the flu.  Gut issues were not our problem and the lack of GI issues is one reason celiac disease is often overlooked.  I swear my GI must have just attended a seminar (though I never asked).  

That helps a lot. The Mrs is looking into alternatives to flour (like almond flour). We bought bisquick gluten free last night, but that says "may contain soy" and I was under the impression soy was a no-no (or at least I read a thread saying such).

Im very thankful to hear I'm not alone in my symptoms. My wife almost thinks I'm crazy when I tell her day in and day out how exhausted I am and how much everything aches. Im praying these symptoms go away soon, because by this time of day I'm spent (and I still have 3 hours of work & my evening with the family).

 

 

[kareng]

Some people think soy is evil.  It is not a gluten issue.  I don't worry about it.

[tessa25]

7 minutes ago, weekendwarrior said:

That helps a lot. The Mrs is looking into alternatives to flour (like almond flour). We bought bisquick gluten free last night, but that says "may contain soy" and I was under the impression soy was a no-no (or at least I read a thread saying such).

There are many different gluten free flours out there. I prefer Pamelas gluten free all purpose flour. So far it seems just like regular flour for me (batter, gravy).

[GFinDC]

You might be thinking of soy sauce?  Soy sauce often has wheat in it.  There are some gluten-free versions of soy sauce though.

Unfortunately the evil soy has invaded our planet.  Soy is one of the top 8 allergens in the USA.  So there are a lot of people who have reactions to it.  But for most of us it is not a gluten issue, unless they are eating soy sauce.  Then watch out!

[weekendwarrior]

49 minutes ago, GFinDC said:

You might be thinking of soy sauce?  Soy sauce often has wheat in it.  There are some gluten-free versions of soy sauce though.

Unfortunately the evil soy has invaded our planet.  Soy is one of the top 8 allergens in the USA.  So there are a lot of people who have reactions to it.  But for most of us it is not a gluten issue, unless they are eating soy sauce.  Then watch out!

Well, I've never had any issues when "includes: soy" is on the label (which is pretty much EVERYTHING), but soy sauce has *always* made me sick. Slowly putting the pieces togehter here, and this is all starting to make sense now....

[Irene Joanne]

Have you had a biopsy as well to get a positive diagnose? If you still need one- don't go gluten free yet

[kareng]

San-J is sold in most groceries & Target.  They make nice gluten-free "Asian" sacues and soy sauce

 

Open Original Shared Link

 

[cstark]

2 hours ago, weekendwarrior said:

That helps a lot. The Mrs is looking into alternatives to flour (like almond flour). We bought bisquick gluten free last night, but that says "may contain soy" and I was under the impression soy was a no-no (or at least I read a thread saying such).

Im very thankful to hear I'm not alone in my symptoms. My wife almost thinks I'm crazy when I tell her day in and day out how exhausted I am and how much everything aches. Im praying these symptoms go away soon, because by this time of day I'm spent (and I still have 3 hours of work & my evening with the family).

 

 

I tried Pamela's flour and it works ok. (aside from being extremely expensive)  I actually tried Pillsbury about a month ago and like it better tastewise and for the checkbook as well.

 

[weekendwarrior]

2 hours ago, cstark said:

I tried Pamela's flour and it works ok. (aside from being extremely expensive)  I actually tried Pillsbury about a month ago and like it better tastewise and for the checkbook as well.

 

Thank you! We're planning an entire house "de-glutening" this weekend and every bit of advice helps!!

[cyclinglady]

7 hours ago, cstark said:

I tried Pamela's flour and it works ok. (aside from being extremely expensive)  I actually tried Pillsbury about a month ago and like it better tastewise and for the checkbook as well.

 

I use Pamela's because it uses guar gum instead of Xanthan Gum.  For some WEIRD reason my body doesn't like  Xanthan gum even after all these years!!!   ?

[GFinDC]

16 hours ago, weekendwarrior said:

... My wife almost thinks I'm crazy when I tell her day in and day out how exhausted I am and how much everything aches. Im praying these symptoms go away soon, because by this time of day I'm spent (and I still have 3 hours of work & my evening with the family)...

Hmm, don't they always think that about every hubby?

Fatigue is not uncommon I don't think.  I sure had plenty of fatigue before going gluten-free.  Some of the fatigue could be caused by vitamin deficiencies, but it can also be caused by inability to absorb fats and the constant immune attack on your body.  Eventually some people might develop what's called adrenal fatigue also,  Lots of things can go whacky in our bodies when they don't get proper nutrition.

You may develop stronger gut symptoms after being gluten-free for a while.  Once we start healing it seems like a new glutening can be more noticeable symptom wise.

One processed food that works for most people is Mission brand corn tortillas.  The are made on dedicated lines and only have a few ingredients.  They make a cheap alternative to bread.  Quaker rice cakes are another cheap option.  Some of them are marked gluten-free now.

Corn meal muffins are pretty easy to make also.   I use 1/2 corn meal and half corn masa.  1 cup of each, 1 egg, some sweenter (Pyure), a little salt, some baking powder, and baking soda, salt and pepper and maybe garlic powder.  Add enough almond milk to make a pancake like batter.  I add a little acid too like lemon juice or vinegar.  22 minutes at 375 F. in a muffin pan.

[weekendwarrior]

I am a little over a week into things and have been dealing with some major ups and downs, confusion and at times total overwhelment.

Ive had one DX tell me the blood test was positive enough to not warrant the biopsy, and that if the symptoms improved when avoiding gluten, then the answer was quite simple. My other DX was almost polar opposite saying the biopsy is the only way to "know for sure" and to wait on going gluten free.

After this past week my energy has been slightly better, my joint aches have subsided and the deep throbbing muscle aches have diminished a lot. However, I've been dealing with headaches, brain fog and an upset stomach.

I really don't have a lot of family to talk to about this, so I turned to social media and this site and so far it's been very helpful. No one (that I know of) in my immediate family have this, so I'm met with a lot of "wish I knew what to say" or "you can STILL be feeling like this?" (not being mean about it, just surprised and not knowing what else to say).

Ive read SO much about this, and both DX's (depending on someone's particular thoughts on the matter) are in a way correct - but having the conflicting statements just clouds my brain up even more.

I just feel like I'm out on this island so far removed from everyone else now that I'm dealing with this.

 

[weekendwarrior]

And my apologies if this is coming across as complaining. I'm just so confused, overwhelmed and still dealing with symptoms. That being said, I think if I cut out gluten on day one and by day two I felt "like new" I wouldn't be in the shape I was in right now. 

[cyclinglady]

19 hours ago, weekendwarrior said:

I am a little over a week into things and have been dealing with some major ups and downs, confusion and at times total overwhelment.

Ive had one DX tell me the blood test was positive enough to not warrant the biopsy, and that if the symptoms improved when avoiding gluten, then the answer was quite simple. My other DX was almost polar opposite saying the biopsy is the only way to "know for sure" and to wait on going gluten free.

After this past week my energy has been slightly better, my joint aches have subsided and the deep throbbing muscle aches have diminished a lot. However, I've been dealing with headaches, brain fog and an upset stomach.

I really don't have a lot of family to talk to about this, so I turned to social media and this site and so far it's been very helpful. No one (that I know of) in my immediate family have this, so I'm met with a lot of "wish I knew what to say" or "you can STILL be feeling like this?" (not being mean about it, just surprised and not knowing what else to say).

Ive read SO much about this, and both DX's (depending on someone's particular thoughts on the matter) are in a way correct - but having the conflicting statements just clouds my brain up even more.

I just feel like I'm out on this island so far removed from everyone else now that I'm dealing with this.

 

So what kind of doctor told you to go gluten free based on just the celiac blood panel?  Which one insisted on the biopsy (I am guessing your GI).  The most accepted diagnostic criteria for celiac disease is the celiac blood panel and biopsies (obtained by endoscopy).  Here is an algorithm by the Mayo Clinic that still shows that biopsy is still preferred (you can verify American And British GI associations who use this algorithm yourself).   There is a good reason to get a biopsy.  You can have more than one issue going on besides celiac disease (Crohn's, h. Pylori, SIBO....the list goes on).  It gives you a good baseline too.

Open Original Shared Link

That said, some people with celiac disease do not go on to having the biopsy for many reasons that can include: 1) hospitalized or too ill to risk having one, no insurance or ability to pay, no access to an endoscopy for months up to a year (heard examples of this for many in a National Healthcare System).   The reasons are endless.

i do not know your situation.  Only you can decide the best course of action.  Personally, I had the biopsy.  I needed it.  My hubby has been gluten free for 15 years based on poor medical advice.  The diet worked, but everyone doubts his diagnosis -- even his doctors.  I know gluten makes him sick.  I also knew how hard it is to be gluten free.  I wanted to know FOR SURE.  I also wanted to rule out other issues.  I needed  a firm diagnosis in order for me to stick to the diet.  Doubters?  I just show them my biopsy report.  

Whatever you decide to do, keep in mind that healing can take months or years depending on your damage not only in your gut but systemically.  The learning curve to the diet is steep.  Mistakes will be made and set-backs will occur, but you can get better.  

I wish you well.  

 

[TexasJen]

Hi Weekendwarrior,

I was diagnosed last year, and I am a lot like you. (I am a mom, though). I don't get GI issues. I was diagnosed due to anemia, but I have the muscle aches, fatigues, joint aches too.  

With regards to my own home, we eat gluten-free dinners every night. Usually grilled meat and lots of veggies/fruit. I did get a couple of new pots and pans, a new cutting board, and a new glass pyrex dishes instead of tupperware(which we really don't use much anymore) when I was diagnosed.

We use the Bisquick gluten-free pancake mix for Saturday morning pancake day so that the griddle stays gluten free.  I keep one pot separate for making real mac and cheese for the kids, but all of our other pots are gluten-free.

My kids eat gluten cereals in the morning. Since I am the one cleaning up the kitchen after breakfast, I take great care to rinse the leftovers down the sink, rinse the bowls extra well so that there is NO residue on them from the cereal and then clean the sink afterwards.  I send sandwiches for lunch (so all the crumbs are at school). they get plenty of gluten outside of the house and for breakfast, so I don't feel bad that most of the snacks and shared meals are otherwise gluten free.  We tend to eat out at a restaurant about once a week as a family (eating in restaurants is a whole other conversation, but it was a tradition we had before the diagnosis so I have tried to keep that up because the family enjoys it)

I have found that it is too much hassle to explain a shared kitchen to grandmothers and baby sitters. They just don't get it. So, if someone else feeds the kids, I make sure those meals are gluten free. Otherwise, the whole kitchen is contaminated.

I wish you luck. It's a hard a adjustment, but doable.

 

[GFinDC]

On 1/26/2017 at 6:44 PM, weekendwarrior said:

And my apologies if this is coming across as complaining. I'm just so confused, overwhelmed and still dealing with symptoms. That being said, I think if I cut out gluten on day one and by day two I felt "like new" I wouldn't be in the shape I was in right now. 

Hmm, you haven't seen complaining yet!  We have some real experts at it around here!    It does seem like if it's food you should be able to stop it one day and feel better the next.  That's what people are used to anyway.  But celiac is different because it is not just a food issue, it is an autoimmune (AI) issue.  Our immune systems are very powerful, and do a great job of killing germs that would otherwise kill us.  When our immune systems get confused and attack our own bodies, we call it an autoimmune disease, or the slightly more palatable autoimmune condition.

With all those big guns (immune system antibodies) attacking, there can be lots of damage.  And the immune system is not a slacker, it will keep attacking for as long as needed or as long as it can.  It keeps producing antibodies to attack and destroy the invaders, or our own bodies tissues in AI diseases.  In celiac we know the trigger for the AI attack/response is gluten in the diet.  In other AI conditions we don't know the triggers.

You may have had a measles shot as a child.  And most likely if you did you didn't get measles.  Even years later.  That's because the immune system learned to attack and destroy measles after that shot.  And it never forgets.  Measles bad, gluten bad.  All the same to the immune system.

Eventually the immune system relaxes a little and tapers off making antibodies to measles or gluten if they aren't present anymore.  But gluten and measles germs are everywhere so the immune system is always ready to go back on the attack.

Otherwise this whole condition is lots of fun.   The time for the immune response to taper off is variable, and directly affects the healing process.  It might be fast for you, or it might be slow.  Any little bit of gluten you ingest will set the immune response off again though.

I understand this is confusing and probably a little (or a lot) frustrating.  At least it was for me when I started out.  Especially a little disheartening is the slow recovery time that can sometimes happen.  That's one reason I think it is good for people to be very strict with their diet at first.  The faster the immune response tapers off the faster we feel better.  Whole foods are the way to go IMHO.

One good thing I think is that people often end up eating much better diets than the mainstream.  Once you get used to eating whole foods the old processed foods lose their appeal.  And whole foods generally taste better too.