mommyof4

Hi and Welcome!

It can feel overwhelming at first with the lifestyle change...with time it becomes second nature, so hang in there.  I was diagnosed Celiac 2 years ago...it really does get easier.  I am married with 4 kids...one of my children also has Celiac Disease, but the rest of the family doesn't.  Here are a couple great tips people gave me that helped...

1. Buy a "Gluten-Free Shopping Guide"...I bought mine on Amazon.  This helped tremendously when I grocery shopped but was unsure about reading labels.  I was able to take most of my regular recipes that I cooked for my family and make them Gluten-Free simplyby altering ingredients.

2. Keep your own butter dish in a cupboard so kids don't accidently use...now I label my own mayo, pbutter, etc with big gluten-free on the lids & my kids know not to "double dip"...however, when they do forget, we laugh it off(and I grab a new jar for myself next time I am at grocery store)...this change was new to the entire family

3. Make sure you have your own toaster...I bought a cheap one in a different color from our "regular" toaster...

4. You will eventually find flour mixes that you love...trial and error...I will say, my favorite is "Pamela's Pancake & Baking Mix"...it makes fabulous muffins, pancakes, cookies, etc. 

5. You mentioned dairy...I also had to stay away from dairy for a while until my gut healed some...each person is different, but I do know that is pretty common

6.  I love the advice above to "be careful, not paranoid". 

Be patient with the journey!

Hi again...The I.V. treatments were for dehydration.  For about a 5 week period of time, I was dehydrating even though I was drinking fluids...I know that logically doesn't make sense, but it is what happened to my body.  Both of my doctors recognized that & had me come into the office & would give me bags of fluid.  It would perk me up so much...I had them a couple times a week for those weeks.

The other "staple" in my diet during those first awful months were bananas, scramled eggs & chicken soup.  I still make that chicken soup when I go through a period of upset tummy( I keep it in freezer baggies in my freezer).  It is simple to make...boil a chicken for a few hours in a big pot of water(you can add spices if you like...most McCormick spices are g.f).  Take the chicken out & pull off the meat & bones...use the broth from the chicken as a soup base.  Add cooked rice & carrots(or any other frozen veggie that you like)....very easy, healthy & soothing for the gut.

Remember that you are in that beginning stage of "healing" your gut.  Even though "technically" you should be able to eat anything g.f., your gut may not be ready.  Also, other foods may bother you...for example, it is very common not to tolerate dairy...I'm hoping your doctor talked to you about some of that. 

It can be overwhelming at first...especially when you are sick on top of trying to figure this all out.  Soon it will all be second nature to you & hopefully soon things will turn around for you. 

I hope you get those days off work to rest! 

I was diagnosed 3 months ago with Celiac and I'm not any better. I'm underweight and malnourished.I work a very physical job with employers who don't care. I struggle everyday with fatigue and joint and muscle pain yet I go to work everyday when alot of people call out alot. Today I asked if I could use 2 vacation days along with my regular 2 days off and they said no that I had to give them a week's notice. It's going to be slow at work then and they could get someone to fill in for me.I've been in tears  all day and I am so tired of this.Nobody understands, that's why I came here looking for support.I feel so alone and like nobody cares.I am so depressed. I take vitamins everyday and have been on a gluten-free diet. I started losing weight 3 years ago the doctor said since I'm older it will take awhile to heal.I come home from work and literally and go to bed until the next day. I spend my days off in bed because I'm too tired to do anything. Thanks for listening and would love any advice you may have.

Hi...you are in a great place for encouragement on this forum!   

You are pretty new into your Celiac journey of healing right now & it takes time...especially if you are a little older.  I'm saying that to encourage you not discourage you.  I was 40 when diagnosed....in Fall of 2011.  I had lost 22 lbs in a few weeks & struggled with malnourishment for months...I had to get IV treatments.  Thankfully between this forum & actually knowing a woman that struggled with Celiac after being diagnosed later in life, I was reassured that I needed to be patient(not that I felt patient with how miserable I felt!)

I don't think I put any weight on for almost a year...I am now almost 2 years in to my journey & I still struggle to keep the weight on(haha...never thought I would complain about that in my life).  But, I am also so much stronger & better than when I was first diagnosed.  I will be honest that my body is not what it used to be...I keep telling my husband that part of this journey is "learning to live in this new body".  

I don't know what to say to help with your work situation...that's tough.  Have you found a local Celiac support group?  That can be encouraging.  I struggled to eat because it hurt & I had no appetite...probably the best thing I did was make fruit smoothies out of bananas, frozen blueberries, frozen peaches or strawberries, vanilla yogurt & PROTEIN powder...it is difficult to get enough protein at the stage you are at.

Hang in there...get as much rest as you can...be patient with the time that it takes...hope things turn around at work!

Hi...I read posts on here regularly, but I haven't been writing on here in a while because I have been doing really great after such a long struggle.  I was diagnosed Celiac by biopsy in Fall of 2011...really sick.  Well, I have been spending the past almost 2 years healing...ups & downs...but so thankful to be heading up more than down.

I finally felt well enough to start looking for part time work(my hubby works & we have 4 school age kiddos).  Our medical bills are so crazy from the period of time I was so sick, & I want/need to help out financially. 

I took a wonderful job a couple weeks ago that I begin tomorrow & my symptoms have absolutely returned.  I am so frustrated.  In my head, I'm sure this is completely anxiety kicking in...something I havent dealt much with but seems to be magnified in this new Celiac body of mine.  I've lost 7lbs in the past week, I get sick every time I eat, mornings are now my worst time, & I think I am panicking because I don't want to end up in the hospital again.  

I just need some encouragement & advice from some of you that have lived with Celiac Disease longer than me.  Is there anything you take to calm down your insides?  Is anxiety another angle of Celiac Disease that I have to get a grip on...if so, how do you deal? 

Sometimes I feel like I have conquered living with Celiac Disease...other times I feel like the disease is kicking my butt!

Thanks for listening... 

Thanks!

I like the idea of dividing the vitamin in half.  That makes sense...especially until the gut fully heals! 

Hi...just want some input on multivitamin supplements for women(I'm 41).  Diagnosed with Celiac the Fall of 2011...doing a lot better(whoohoo), but still having fatigue. 

Also, I notice some multivitamins have "wheat grass"...I'm getting mixed input on whether or not it is ok.  My first reaction is "no" to anything with the word "wheat"...anyone know?

Thanks...

I just picked up Core Daily-1 by Country Life

You have already gotten quite a few great responses.  I'm just going to add a quick response too since we have had several weddings in the past year & I have had the same issue. 

Usually the wedding invitation states who is catering...I have had good success calling the cateror or restaurant myself & just asking if they are familiar with g.free & if they can offer a g.free alternative.  I can tell pretty quickly if they know what they are talking about or if I need to eat beforehand & make sure I have a purse full of food with me.    I get really sick too if I get glutened.

Since I LOVE chocolate, I do bring a piece of chocolate of some sort in my purse...otherwise I feel sorry for myself not getting that wedding cake...ha! 

Hi Laura!

Welcome to this forum.  No question is ever stupid, and this is a great place to get answers from experienced people.    It is overwhelming to figure this g.free thing out at first, but just like some others posted, it will become second nature with time. 

When I was first diagnosed with Celiac in the Fall of 2011, I remember having that fear of constant cross contamination...especially when you live in a household of gluten eaters too.(I have a hubby & 4 kids...only one child has to eat g.free).  I had to figure this out without driving myself & my family crazy.  It has actually turned out to be a great learning experience for all of us...it just takes time.

Make sure you have your own toaster, own butter dish(I keep my butter in a seperate cupboard), & own foods that are jar dipped(like p.butter, mayo, etc).  I use all the same dishes & utensils for eating.  I bake with the same cake pans, muffin tins, frying pans, etc...I just make sure everything is washed well.  I found, with time, that most of my baking is g.free anyways just because I don't want to make 2 different meals or treats.  I like the advice about the colander & teflon vs. stainless steel pans...I hadn't thought of that. 

Anyways, good luck...you will get this down, just relax & give yourself time.          

I'm glad you brought this question up.  I find that sometimes it is difficult to know if symptoms I deal with are related to Celiac Disease, aging, peri-menopause, "normal" woman issues...it's crazy to sift through!

Have you been in to see your gyno just to make sure everything is ok?    

I have had some issues with ovulation & my periods also...I am 41 yrs old & was dianosed Celiac in Fall of 2011...not sure how many years undiagnosed.  What is crazy with me, is my G.I. issues get worse during ovulation & my period.  My paps are normal & I've had my ovaries ultrasounded.

Thank you, Steph, for that link to the webinar about perimenopause.  I've talked to my G.I. dr about my issues with my period.  The main response I get is that inflammation during those times of the month can affect our whole system, but to make sure I am seeing my gyno. also.

Anyways, sorry you are dealing with this...keep us posted on how things are going.

I was diagnosed with Celiac Nov. 2012.  I began the gluten-free diet right off.  I am still having a lot of GI issues and I have to run to the bathroom a lot for a sick stomach (D).  Any recommendations on foods I can eat that are easy to digest and will help with the healing process?  I am keeping a food journal to try and figure out what is agreeing and disagreeing with my body.  Also, I gave up dairy, coffee, and alcohol to try and help promote the healing. I am also taking a special mulitvitamin that has probiotics and digestive enzymes formulated for people with Celiac.  Thanks for any and all help. 

It sounds like you are on the right track.  Healing can be different for each person, so try to be patient with your body...especially on those "off" days.

I was diagnosed with Celiac the Fall of 2011, so I am almost one year ahead of you.  I also had lots of GI issues & pain.  I was really sick & didn't have much of an appetite...had lost 22lbs in a few weeks from malabsoption...undiagnosed Celiac had affected many things in my body.  The first year was a rollercoaster of learning, adjusting, dr. apts, & healing. 

The one meal I lived on for months until I could handle more food was homeade chicken soup.  So simple...I boiled down a whole chicken on the stove for about 2-3 hours(cover the chicken with water in a big pot), took the meat off, added cooked brown rice & frozen veggies.  I froze the soup in ziplock baggies so I would have an easy lunch/supper.  I also ate fresh or frozen fruit...bananas, blueberries,etc.  Chicken breasts, grilled salmon...all easy to digest.  I stayed away from citric, tomato based, & dairy...you may find you have other food intollerances.  I found that I had a tough time with raw veggies, so I bought a juicer & started juicing anti-inflammatory veggies. 

So, here I am almost 1 1/2 years later & I am doing soooo much better!  Before diagnosis, I didn't know much about Celiac Disease.  Now, this lifestyle of g.free living is 2nd nature.  I am learning to be patient with my body.  I still have an "off" day now & then, but not nearly as bad as an "off" day a year ago(where I would be in bed for the day).  Our bodies are made to heal from MOST things (I know, not everything) with time.

The other thing I would encourage is "move" your body...walk, walk, walk...or whatever you can handle without overdoing it.  Find a local support group or connect locally with people that eat g.free when you are ready...it can be fun exchanging recipe ideas, laughing at horrible products you waste money on, etc. 

Keep us posted on how you are doing 

Give your body time to heal...it can takehow long you were Celiac without knowing it & how much damage you have. 

Thanks for the recipe & the various links! I haven't been on here for a few days...it's that busy time of year. I love this forum...no one understands some of the challenges of Celiac Disease (& gluten sensitivity) & the lifestyle change it involves better than people on this forum. I am excited to try a few new baked treats for the holidays.

Hope you all have a Merry Christmas!

Would you share your cinnamon roll recipe? Not sure if we should e-mail...this is the only "forum" I have ever gone on? My "specialty" before g.free with my family was caramel rolls...I've tried making them g.free but cannot seem to get that fluffy texture. I use Jules Flour for a lot of my baking, but I have quite a few other g.free flours sitting around.

I've always baked quite a bit...family of 6. I kind of lost my motivation this past year with how sick & worn out I was...I look forward to some new motivation this coming year!

Thanks all for the great ideas & encouraging respones!! That's what I need...motivation to keep moving forward with this life change. I am anxious to try the green goddess veggie dip & look for that cookbook. My daughter (in 8th grade also) eats g.free & is always up for new recipes...we had all 4 of our kids tested for Celiac when I was diagnosed.

I know I will get more motivated as I get back to full health...just have had a few issues tagging along with Celiac that have slowed me down. Yes, I would love to share recipe ideas, CeliacMom2008...how long have you been doing the g.free lifestyle?

I am a little over a year post-diagnosis. Last year at this time I was too sick to care about the holidays. The tempting food wasn't remotely tempting...I wasn't attending parties...I was surviving on scrambled eggs, bananas & homeade chicken soup.

This year I am trying to keep a thankful heart because I AM so thankful to be feeling better...not back to 100%, but better. However, I go through these periods of feeling overwhelmed by the fact that this is FOREVER!! I am reminded of that every time I go to a bridal shower, holiday gathering, out for dinner, etc. When I listen to everyone ooh & ahh over the food (that I can't eat),I have to check my own attitude. Somebody tell me it gets easier to have a good attitude!

So, some of you that have lived with Celiac or gluten-intolerance, could you give some ideas on handling holiday & party issues. What are some things you do when you are staying with relatives? Any fun ideas to make Christmas parties fun even though you can't eat 90% of what is served. I always offer to bring g.free goodies to share, but just wondering what some of you do to keep a positive attitude in the midst of such a lifestyle change?

I know this journey can be frustrating & exhausting!

One other thought...have you ever tried juicing? It's just one more idea...you can read about the benefits of juicing online. I bought a juicer about a month and half ago...I also have had ongoing issues...I am a year post-diagnosis. I read an article from a gentleman with Celiac that started juicing & it really helped him...so, I thought I would give it a try. I feel like my energy has increased some, but it is really too early to tell. I juice about 28 ounces a day of carrots, cucumber, celery, apple, spinach, beets...or whatever else I want to throw in.

Just a thought...hang in there!

Just a thought, why don't you have a doctor simply do the Celiac Panel on you or the gene test (if your insurance will cover it)? It is a simple blood test...if your doctor knows you are pretty sure you are Celiac, he/she would probably gladly run the blood work. Even if the results are negative, you know that eating g.free is helping you. But, if the results are positive, you may want to find a good g.i. doctor to "monitor" you...even if you only go to that doctor if you have issues. Because Celiac Disease itself is hereditary, it would be good to know for sure so that if you ever have children you can keep an eye on them & get them tested.

Now, with that said, I completely understand not wanting to dive into a bunch of dr apts. But, Celiac is a serious disease. I personally was diagnosed a year ago after being really sick...in the hospital, lost 22 lbs in a few weeks, etc. Anyways, I have been thankful for my G.I. doctor that specializes in Celiac because he understands what is going on in my body. We also have 4 children, so we immediately did the gene test on them & the Celiac Panel. 2 of our kids do not even carry the gene for Celiac, so we don't have to worry about monitoring them. 2 of our kids have the DQ2 gene & tested positive on the panel...we are looking at doing the biopsy for confirmation & I have been dragging my feet on getting that done because they are children, yet we want a definate answer.

I know how frustrating & overwhelming figuring all of this out can be. Again, this is all just my opinion...

Good Luck on this journey...keep us posted on how it is going...

A couple more quick items...it is common for insurance to deny capsule endoscopy, but you don't need that for confirmation of Celiac Disease. It is usually used if there are ongoing issues with Celiac...it kind of suprises me your dr even suggested it.

You shouldn't need to fast for the Celiac Panel Blood test...I have had it & all 4 of my children & none of us had to fast. Your blood work that you mentioned that was taken earlier very likely may be normal. Most clinics don't routinely do the Celiac Panel, so I highly doubt that would have been taken.

Personally, I would like to see all children routinely get tested for Celiac Disease at one of the school well-visit checks...especially since it starts with a simple blood test.

Anyways...just wanted to add those other thoughts...

Hi...welcome! You can do this...I hadn't heard much about Celiac Disease before I was diagnosed a year ago either. This forum is wonderful for questions & encouragement.

The "gold standard" to confirm Celiac Disease is the biopsy...so be confident in that diagnosis. Personally, I would do the blood test too...the Celiac Panel...just to see where your numbers are so that you can compare them in a year or so. However, if your blood test is negative, I would still go with the biopsy confirmation because some blood tests are negative. If you are going to do the blood test, you really need to get it done before you eat g.free. Also, most local clinics should be able to order that blood test if your G.I. dr wants it done. My G.I. doctor doesn't do a follow-up biopsy unless there are still issues.

So, here are (in my opinion) the 3 best items to buy when someone is getting started...

1."Gluten-Free Shopping Guide". A HANDY book that you can order on Amazon...it is a lifesaver in figuring out what products are g.free without spending a ton of time reading labels.

2. Pamela's Baking and Pancake Mix...this mix makes awesome muffins, pancakes, cookies. You can pick this up in most grocery stores, but it is cheaper to order on Amazon

3. Jules Gluten-Free All Purpose Flour...I substitute this in my regular recipes & it is awesome. You have to order it on line on her website

There is definately a "sticker-shock" factor in learning to eat gluten-free. You can do this though...you will learn & it really does get easier. I was completely overwhelmed at first as I think so many of us are, but with time it becomes second nature. When I make a meal now, I usually use my old recipes & just alter the ingredients to make sure they are g.free.

Good luck...keep us posted.

Your primary care doctor should be able to check your vitamin levels...you could certainly mention it to the G.I.doctor when you meet with him/her. Also, are they scheduling a biopsy pretty soon? I only ask because going gluten-free can change the results depending on how much damage is already done & how quickly you heal.

I understand the fear with nursing...I nursed all 4 of my babies(last one 8 years ago) & I was very likely undiagnosed Celiac then. I am almost 1 year post-diagnosis. Just relax though, you are heading in the right direction.

I didn't see your earlier post, is your 4 year old Celiac? I made that assumption.

Kelly,

I am almost a year post-diagnosis. I see a G.I. doctor that specializes in Celiac...but I have to travel 4 hours to see him. My local dr. is also very familiar with Celiac, so she has been able to run follow-up tests.

With that said, I would recommend you find a dr that is at least familiar with Celiac Disease or willing to learn...and find one that is a good listener. You can call your local clinic and ask if any of the doctors work with continuing care for Celiac Disease...or ask around if you know any other local Celiacs. Hopefully you won't need a lot of continuing care. I know my G.I.doctor recommends a follow-up visit one year post-diagnosis...I have been in to see him a few times because I had other issues tagging along with Celiac.

This forum is a great resource to answer questions too...but it is good to get in with a good doctor too.

Good luck!

Just curious if anyone out there has tried juicing raw veggies to help with healing the gut from Celiac? If so, let me know your thoughts, how long before you noticed some improvement, which veggies seemed to help the most, etc.

I am almost a year since being diagnosed with Celiac...was at dr last week as I still have some pretty significant left side pain...most of my other issues have resolved going gluten-free. Still having inflammation & a few other issues...thought I would give juicing a try.

Thanks for your input...

Ada...thanks for sharing! It is inspiring to hear the healing that you are feeling after 2 years...I also appreciate this site so much! I am 10 months post-diagnosis & I need hear from people that are further along than me.

Ranne10...hang in there. You are only 3 months in...that's still really new. Healing the gut in an adult can take years. At 3 months post-diagnosis my husband still had to do all the grocery shopping in our house...I had lost 22 lbs, lots of muscle mass & was too weak to do almost anything. I remember spending MANY nights up wandering the house in pain...or curled up in a ball on the floor. I still have issues, but I CAN function! I still wear out, but I can take care of the daily things...at 3 months post-diagnosis I was discouraged this day would not come.

Anyways...one day at a time for all of us!

I just want to encourage you to "hang in there". Without trying to over simplify, really try to walk through one day at a time...tackle each new problem as it arises. It's only natural to feel frustrated & discouraged. Believe me, I get that!

I was diagnosed last Fall & I also am a mom (of 4). I was in & out of the hospital, lost 22 lbs in a few weeks, & was in pain. I couldn't even grocery shop for a couple months because I was so weak from lack of absorbing nutrients & dehydration. I was frustrated & discouraged...all I wanted to do was keep living! I had to have my mom & mother-in-law help me with the kids for a while. My sister-in-law kept telling me "this is a season you are walking through, NOT staying in!" I still try to remind myself of that when I have a rougher day. I have had other health issues arise because of the damage, BUT the rough days are fewer.

I agree with the previous post about stress reduction activities...that can really help. A massage or relaxing with a cup of tea. You mentioned that you are a religious person...I also am, and I have little notecards all over my house with Bible verses to encourage my mind & heart.

One other little thought, if you can have someone go with you to your dr appointments, that can be helpful. Often so much information is given that it can be difficult to remember everything.

This is a great site to post on...people are supportive, encouraging & experienced. Keep us posted on how you are doing & what you find out!

I guess we both got the same advice/treatment plan from Mayo? I still have the pain sometimes..and tingling in my shoulder blade. I guess we just have to wait?

To the OP..have you had your gallbladder out? I thought I read something to that effect in another post? If you are still having symptoms you may need to take the digestive enzymes because of the CCK not being made..or sent, and probiotics to help balance your gut flora?

I've also been doing some reading on salicylate sensitivity and it looks like that *could* cause gallbladder type symptoms? Just another thing to consider...

Is Dr. Murray your dr too? Yes, I guess we wait. The digestive enzymes have increased my energy...I am eating pretty bland foods. I find really acidic foods like tomatoes do not settle well. I also stay away from a lot of red meat...any meat that takes a while to digest. I hope that changes when things heal...I really like a good steak! However, it seems chicken & fish settle best right now.

As far as the skin CG...I feel like I have aged in the last 10 months also (granted, I have been through a lot of tests, procedures, etc.) Let us know what you discover about that or if you come up with any good ideas to help.

I also have had the gallbladder issue...HIDA scan showed mine functioning at 15%. My dr at Mayo put me on CREON...a digestive enzyme...& I take 1-2 with each meal. He also recommended I do not have the gallbladder removed at this time...he said the gallbladder isn't getting the signal to work due to damage in the beginning of small intestine & that it should heal with time. Remember, healing in the gut can take a long time in adults.

So, I also am waiting...that was in June. I was diagnosed with Celiac last Fall, so it has been about 10 months. My energy level definately improved once I started the digestive enzymes.

I would also recommmend a good probiotic...I like NOW 8 billion acidophilus & bifidus...I know there are a lot of different brands though. I guess you need to make sure it is the kind that needs to be refrigerated.

Hope a little more info helps. I know how frustrating this journey is at times. I keep telling my hubby that I have no problem eating gluten-free...I would just have a lot more motivation if I would feel back to 100% faster. A friend of mine reminds me that this major life change is also getting used to a "new" normal.

Good luck...I agree, this forum is a great resource & support group!