mommyof4

Thank you for all your replies...I find it interesting how many others with Celiac deal with many of the same issues.

For the past month I have been taking 2 digestive enzymes with each meal(my dr recommended) & it seems to help. I still have a night about once a week or once every 2 weeks that I am up with that left side pain. My energy level is getting better...granted that may be because I am 10 months post-diagnosis. I still lie down for a little nap in the afternoon, but it's not the complete exhaustion that I had.

I have eliminated most dairy. I also am really careful on slow digesting foods or non-digesting foods...for example, I notice when I eat red meats like hamburger, steak or roast I have that left side pain worse. I also don't eat popcorn or corn on cob as neither digest well.

I guess so much of this is "trial & error"...hopefully when the gut is totally healed I won't have to avoid so much besides the obvious gluten.

It's great to have a place to share support & ideas!

My story is the same as yours. We are about the same age as well. Yes, other food intolerances can make you feel glutened and cause very similar symptoms. I can't have corn at all. Which is really hard because it's in everything. I am down to meat, fruit and veg. Nothing packaged. It's the only way that I can feel good.

Hang in there and try eliminating some things like dairy and corn.

How many months/years post-diagnosis are you? Do you also have fatigue?

Thanks for the replies...I appreciate the input as I piece this journey together. I guess something I am having a tough time wrapping my brain around is this...for 40 years of my life I felt pretty great, worked out regularly & ate anything. Now, 9 months ago, that all changed. I got really sick & found out I am Celiac. So, can other food intolerances trigger at the same time the Celiac triggered(although I could of been Celiac for years & not known it)? It has been a slow road of recovery...I am not used to that in my body & it frustrates me.

I have been watching my food & I will keep doing that...

Thanks for the input!!

Does anyone deal with left side pain/pressure/bloated feeling? I am 9 months post-diagnosis & have had so many tests done. I am feeling so much better, but I still deal with this left side pain. It feels like there is something under my left ribs pushing up. I have gallbladder issues...HIDA scan showed it functioning at only 15%, but my doctor at Mayo wants to give that time to heal due to the small intestine damage. Maybe it is all related? All I know is it's driving me crazy & it often keeps me up for a few hours in the night. I am on probiotics & digestive enzymes.

Has anyone else dealt with this?

Thanks...

I just wanted to give a quick update on my gallbladder issue...a few weeks ago I did the HIDA scan & it was functioning at 15%. I just saw my dr at Mayo...we did a full abdomen ultra sound...no stones in gallbladder. He does not want to remove it...says the low-functioning is a result of the gallbladder not getting the signal from the small intestine to work. The small intestine is where my damage is, so I guess that makes sense. He has seen this all turn around after enough healing takes place...I am about 8 months since diagnosis.

So, I am on digestive enzymes & hoping things resolve. I am amazed how many things Celiac Disease can effect in our bodies!

Hope this gives insight to anyone else dealing with gallbladder issues...

I may not be the best one to reply because I am 8 months since diagnosis & I still have some issues we are "figuring out".

However, nausea was a big thing for me those first months...I was on Zofran for the nausea...which helped some, but I still struggled with it. I know that feeling of being desperate to try anything to help...soooo off to a chiropractor I went. He's not the "bone crackin" kind of chiropractor, but he works more with muscles. I only had to go a few times & he worked muscles in my neck...I also had many procedures done during the diasnosis stage...4 endoscopies in total, CT scans, MRI's...the chiropractor suggested that sometimes the way the neck is manipulated can cause nausea. For me, as soon as I went & had my neck worked with a few times, I was able to stop taking the Zofran. I have no idea if it was the chiropractor that helped or just time that helped.

I've read that nausea can be an effect of Celiac...I still will have some nausea, but not like it was at the beginning. You are still only a couple months post-diagnosis. I also agree with the previous post about watching for other food intolerances, although it sounds like you are pretty careful.

Hang in there...I know how much of a life change all of this is! I've told my husband many times that I don't mind the diet change...I just want to feel 100% "back to normal".

Interesting! I am encouraged that perhaps this can all turn around!!! I see Dr. Murray June 15...only 2 weeks...I'm hoping we can get to the bottom of the gallbladder issue.

I am down to eating pretty much rice, veggies, fruit, chicken & g.f.toast. I would take a bigger bum too if it made me feel better!

I will let you know what happens...

Interesting...Dr. Murray is my doctor also. I am going to see him within the next few weeks as I also have some unresolved issues...I last saw him in January. He wants to take a closer look at my gallbladder through ultrasound. He also prescribed digestive enzymes...I have to pick the prescription up today.

So, are you feeling better? When you had gallbladder pain, was it ever on the left side? That's what is driving me crazy...one day I feel fine, the next I may have pain or just discomfort on the right side, the next it may on the left side. Did your pain ever rotate like that? I know the gallbladder is on the right side, so this baffles me. I know my intestinal issues are healing because after losing 22 lbs in a few weeks last Fall, I have put 12 lbs back on & I don't have diahrrea anymore.

Thanks for your input...thanks to everyone above that gave input too!

Thank you both...very interesting websites on gallbladder & Celiac. Very interesting, also, about both of your issues with gbladder.

My Celiac doctor at Mayo called me late afternoon. I am going to go see him in a couple weeks(we live 4 hours from Mayo, so everything has to be planned out), so I will let you know what we find out. In my situation he said NOT to rush into getting it removed until we know WHY it is low-functioning...it still may need to come out. Yes, it is very common for Celiacs to have fatty liver & gallbladder issues just like both of you said. I am hoping it will perhaps heal on its own as my body fully heals.

Very interesting...thank you for your replies. One last question for you both...did you feel better once it was removed? I just want to dive back into life with that energy I used to have & no discomfort/pain...it is taking sooo long. I am trying to keep up with my 4 kids & hubby, not talk about all "my issues", & trudge forward with a positive attitude...sometimes harder done than said!

I'm thankful for this sight as there are so many questions I have...has anyone had gallbladder issues? I have been fighting fatigue and this upper right pain since being diagnosed with Celiac last Fall. A CT of my gallbladder was done last Fall...no stones...BUT I still have this fatigue & constant "discomfort" on right side...my other intestinal issues have resolved going g.free. So, this week I asked my local doctor to do the HIDA scan & if all is normal I will never bring my gallbladder up again...I have a great doctor that agreed. My gallbladder is only functioning at 15%. I have put in a call with my specialist at Mayo.

Just curious if a low-functioning gallbladder has caused anyone here issues? If so, can it heal naturally or did you get it removed? If you healed naturally...what did you do? I'm to the point with all of this that I'm ready to do whatever it takes to get things "NORMAL"!!!!! I also have a fatty liver...I'm not heavy(124 lbs) & I don't drink alcohol. Can fatty liver, celiac & gallbladder issues be related?

Like I said, I have a call in to my Celiac Dr at Mayo, but until I hear back, I'm curious of other Celiac's experiences.

Thanks...again!

Thanks for all the input! The last post about describes my fatigue...at first I was bed ridden(my mom lived with me for 5 weeks as I went through testing & was losing insane amount of weight)...now I still nap once during the day just so I can make it through the evening when the kids are home from school & need me.

When I look back over the past 7 months, I am improving...just not as fast as I want...guess I need to have patience. I think the slowness of recovery has made me discouraged...I just want to be "normal". I try to walk everyday...I used to rollerblade 15 miles at a time. I want to get back to teaching...I work with young children so I need lots of energy & I have taken almost this whole year off since getting sick.

Today I am doing the adrenal fatigue test...saliva & urine. I am also going to a local Celiac Support Group potluck for the first time tonight. I know that I need to "get on" with living as a Celiac but I just really struggle with all of this some days.

Guess I just need to vent my discouragement...thanks for listening!

I'm 7 months post-diagnosis & still fighting a lot of fatigue. Had blood test a few weeks ago to check vitamin levels, thyroid...everything looks good. I have to drag myself through the day. How long before energy levels return?

Hi...very interesting post. Dr. Murray at Mayo is my doctor also...he's fabulous! I was just diagnosed last Fall by my local doctor but sent on to Dr. Murray at Mayo after 3 months. My bloodwork was negative but biopsy positive...well at least by that 3rd month. The local doctor accidently did the incorrect blood test & by the time it was redone at Mayo it was negative, so we aren't totally sure.

Before being diagnosed I took IBProfin pretty much daily...I had such horrible headaches(which have resolved going g.free). The only prescription med I took was Immitrex for migraines. I have had a pretty slow recovery & am looking into other food sensativities or hormone issues.

Keep us posted on what you find out. Good luck at Mayo...hope they can help you!

Hi!

I am 7 months post-diagnosis...I'm also 40.

I am getting really sick the day or 2 before my cycle starts. Terrible pain in my left side & back...up most of the night. I had blood work done last week to check thyroid, vitamin levels...about 12 things. Everything is normal. Next week I am doing a "natural" test...urine & saliva to check hormones, adrenal fatigue, etc.

So, my question is, can the trauma on the body from Celiac cause changes in menstrual cycle? I'm not sure how long I was an undiagnosed Celiac.

My other question is one from fear...until I got sick this Fall, I was pretty healthy(so I thought). I have had lots of tests done...MRI's, CT scans, 4 endoscopys(I had a telescoping intestine along with the damage in my intestine). I am trying to be at peace with my body healing. I am getting better, but I still worry that the doctors didn't find everything. I never used to be like this & I don't want to turn into a hypochondriac. Has anyone else experienced fear during this healing process? I especially feel fearful when I have an off day.

By the way...haven't baked with regular flour anymore & am logging food.

Thanks...

Please don't think I am completely ridicuous, but is it possible to get glutened baking non-g.f. items? I didn't really think of that. Like I mentioned, I am pretty new to all of this. I just assumed that if I didn't eat the item & if I kept baking items seperated, I would be ok. Very interesting. I will journal all of that too. I try to bake mostly gluten-free...I'm just caught in the place of wanting to make a few items for the non-Celiacs in our home too.

Guess I need to learn how to bake homeade g.f caramel rolls...just can't seem to get g.f bread dough to rise!

Thanks for your post...I appreciate input from someone who is seasoned!

This is a very interesting question...my husband & I are in the middle of figuring this out ourselves right now. I was diagnosed Celiac 6 months ago. I got really sick & ended up spending 2 weeks at Mayo Clinic getting testing done...I am still in recovery mode, but improving. Because it is hereditary, we had our 4 children (ages 7-14) tested. Two of them carry the DQ2 gene. One of those has active Celiac...diagnosed through the Celiac Panel blood test. My husband is not Celiac and 2 of my children are for sure not.

So, lots of changes for us. Almost all of the cooking I do is gluten-free. Our evening meals we eat as a family are 100% gluten-free & any cookies, bars or other treats I make are also gluten-free. However, I do still make some favorite gluten items for the non-celiacs in our home...like homeade caramel rolls...as they are a favorite...I don't eat them, obviously. I don't feel like everyone should have to give up everything if they don't have to, yet I know there is a risk of cross-contamination.

With that said, as a Celiac, and a mom of both Celiacs & non-Celiacs, the reality is that our whole family needs to get used to this change & I want it to be as positive as possible. We have years of birthday parties, graduations, weddings, etc. to look forward to & we will probably always have gluten & gluten-free cakes at all of them. I want all 4 of my children to learn to cook g.free.

It is such a personal decision to figure out what works best in your own home.

As far as having children, even if I had known before having children that I am Celiac, I would definately still have had them! Being Celiac is not a horrible thing...just challenging. I often think how thankful I am that changing my diet can increase my health...we are fortunate. There are many people that cannot improve their health with diet. Again, a personal decision, but children are such a blessing! Get connected with a fabulous doctor that can be an encouragement & keep an eye on your health & your child's health...that would be my suggestion if you have children...Celiac or not.

Thank you for your replies. I was journaling food for a while...I have let that slack, but I will definately start again to see if there are any other food intolerances. I also appreciate the info about perimenopause...I really hadn't thought about that. Both my mom & sister had hysterectomy's, so I don't have any idea our family history with menopause...is there a way to check perimenopause at the dr?

HI,

I guess I just need some advice or perhaps encouragement from "seasoned" Celiacs. I was diagnosed with celiac disease 6 months ago...long story, but I was very sick, in the hospital, lost 22 lbs., weak & shaky for months. Anyways, when I look back over the past 6 months I can tell I am recovering...for that I am thankful. However, I still don't understand why one day can be really good physically & the next can be tough. For example, yesterday I felt great...almost "normal" for the first time since I got sick. Today I am "off"...I feel foggy, anxious, tired & a little discouraged. I bake everything I eat or eat raw fruits & veggies. I don't think I got glutened yesterday...maybe I did & don't know it.

I am a 40 year old wife & mom of 4...I just want to feel consistantly "normal". It's difficult to plan things when I am not sure how I will be feeling or if I will have to change those plans. Mentally I am trying to keep a really positive attitude, but some days I just wear down with this change of life.

How long did it take some of you to feel consistantly "normal" or the "new normal"? Last time I had my vitamin levels checked, everything was good. I take a g.f. multi-vitamin & probiotics.

Thanks for your input...

Thanks for both replies. My vitamin levels were checked a couple months ago...when I was first sick, but I actaully was thinking about having them rechecked as well as my thyroid. My doctor had mentioned that sometimes the thyroid gets a little messed up with such a severe change in the body.

What a journey this is...

This is my first post to this sight...although I have been reading postings for the past 4 months...so bare with me on the details. I am grateful to have a place to learn & ask questions...especially as a newly diagnosed Celiac. Until 5 months ago I didn't even know what "Celiac Disease" was. I went from being a healthy(or I thought I was healthy) 39 year old Mom of 4 to VERY sick quickly. I was in the E.R. 3 times with abdominal pain & admitted to the hospital. I've been through ridiculous amounts of testing...colonoscopy, endoscopy(3), CT scans, MRI of brain & abdomen. I lost 22 lbs. in a few weeks time & spent the first 3 months shaky, nauseous & getting I.V. treatments for dehydration almost weekly. I was diagnosed with Celiac Disease through the endoscopy's & gene test.

So, with all of that said, my life has been turned upside down. I was really overwhelmed at first because of the major change in diet, but since I had absolutely NO appetite from being so sick, it was easy to give up some of the foods I used to love...like Oreo cookies! I literally lived on scrambled eggs & bananas those first months.

After learning that Celiac is hereditary, we had our 4 kids tested with the Celiac Panel & Gene Test. 2 of our kids are positive...haven't done the endoscopy yet on them...which is a whole other topic. I am determined to make this transition in our life positive...and I am learning to love to cook...the food is sooo much better when it's homeade & I also can control what goes in our food.

Here's my question...it's been almost 5 months since I have been gluten-free & I am still fighting fatigue. Is this normal? When I say fatigue, I still nap almost everyday. I don't have the shakyness anymore although I am sometimes sort of dizzy/foggy. I also have a "rough" day occassionally where I can do nothing. Before I got sick I could rollerblade 15 miles at a time...now I can barely walk 1 mile. I am feeling frustrated & I have no idea what's normal & what isn't.

I think I also am just feeling overwhelmed...any suggestions? Thanks for your time & input...