Biopsy Confirmed=No Longer In Denial...please Help!

[jamiecasabellameeks]

I just got a phone call from my doctor's office saying biopsy I had last week confirms Celiac. (I had blood work approx 1 mth ago that was also positive).  I have been gluten-free for 1 1/2 weeks now.  Trust me, I understand this is a LOOOOONG (life long, actually) journey and that I am only just beginning.  I just can't seem to shake this dizziness and brain fog.  Today and last night I continue to have horrible stomach cramping.  I just want to make sure I am doing EVERYTHING "correctly".  I am currently taking Dexilant (?) for GERD, a priobiotic, and Vitamin D supplement.  

 

Would you suggest I:

a.) Get new pots/pans?

b.) Remove ALL gluten from my home? (my kids are 3, 2, and 1 years old.  I am constantly having to pick up their food/cut their food/clean up after them, etc....)

c.) Go PALEO for the beginning of my journey at least? (if this is the case---I don't know where to start)

d.) Take any other suggested vitamins/supplements??

e.) Check my make-up, hair spray, shampoo, etc... for gluten?? I've heard this can affect some people.

 

OR DO YOU SUGGEST ANYTHING ELSE THAT WORKED FOR YOU STARTING OUT??

 

I'M SO GLAD I FOUND THIS FORUM.  I HAVE LEARNED SO MUCH ALREADY--MORE THAN FROM ANY DOCTOR/DIETICIAN I'VE SEEN SO FAR!

 

THANK YOU!

 

[jamiecasabellameeks]

I ALSO WANT TO ADD REAL QUICK...WOULD YOU SUGGEST I GIVE UP MY MILO'S SWEET TEA??

I'LL BE HONEST...I REALLY DON'T WANT TO, BUT I WOULD HATE FOR THAT TO BE THE ONE THING THAT IS KEEPING ME FROM GETTING WELL...

[bartfull]

I just checked Milo's website and they said "gluten is a protein from wheat and there is no wheat used in Milo's". It doesn't say anything about barley (or rye, which I doubt they use), but I would contact them via e-mail or phone to confirm there is no barley used, or that they don't process anything else on their machinery that might contain barley or wheat.

 

As for the rest of the suggestions - a qualified yes. If your pots and pans are cast iron or scratched teflon, yes. Also, a new strainer, new wooden spoons, new toaster, and any plastic containers with scratches should be replaced.

 

If you can transition the kids that would be wonderful. With gluten crumbs all over the house it is too easy to touch something they have touched, then either eat something or even touch your lips and get glutened. I know. It happened to me.

 

I don't know that you have to go paleo, but whole foods (meats, veggies, fruits and nuts) is a great idea. I continued to eat rice and dairy because they never bothered me, but a lot of folks have trouble with dairy so you might want to give that up for a few weeks while you heal.

 

Vitamins and supplements? Definitely, but make sure those and any other medications you take are gluten-free. You should get a gooc probiotic too, and some folks here swear by digestive enzymes too.

 

Make-up? Lipstick for sure. I use NYC. It's inexpensive and can be found at Family Dollar and other stores.) The foundation I use is most likely not gluten-free, but I am really careful about not touching my face and then eating. My eye make-up, I don't even worry about it.

 

Shampoos and conditioners might at some point get either in your mouth or up your nose so it would be a good idea to go gluten-free on those. Suave is gluten-free. Once again, less expensive and can be found almost anywhere. I have used it most of my life anyway.

 

All that being said, you are probably still in gluten withdrawal which will make you feel pretty bad. Plus, you are so early into this that you are still healing. A few of us feel a lot better within weeks, some of us feel better within weeks but then go on to develop secondary intolerances which make us feel lousy again until we figure it all out, and some of us take months or even years to feel better, depending on how long we went undiagnosed.

 

So stick with it, be careful, but be hopeful. You have finnaly found the key, and although the door to good health hasn't opened yet, rest assured that it WILL.

[EmiPark210]

It'll get easier. 

 

a) If you have non stick pans that don't have scratches in them, from what I've read here that should be fine (please, anyone, correct me if I'm wrong) but you should replace anything that can absorb whatever you use it with or things that aren't cleaned so that would include wooden spoons, natural bristle basters, cast iron skillets.

It would be easier if you remove all gluten and can create a "safe zone." There is also a pretty good chance that one of your kids has celiac's too because it is genetically based. So before getting rid of all gluten you might want to get them checked.

c) You don't need to go quite as strict as paleo but a lot of people find that it helps the healing when you don't eat a ton of refined grains and dairy just after diagnosis. So yes stick to whole foods, but keep it somewhat reasonable.

d) If you have a well balanced diet then you should be fine for supplements baring any other complications. Right now you probably have some deficiencies because of consuming gluten but those should go back to normal. You can get a vitamin pannel done or talk to your doctor about what is right for you with your medical history. Just remember to make sure that any and all medications are gluten free

e) anything that actually goes in your body (intentional or not) needs to be gluten free. So things that could be accidentally inhaled such as hairspray yes though I don't have any experience with the prevalence of gluten in hair spray. But lipsticks and balms, definitely.

 

If you're uncertain about any food or beverage call the company that makes it. 

[kareng]

Have you checked out this?

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

What are the ingredients on your tea? That's the best way to see what is in it. There is a slight chance it has barley malt as a sweetener but it will say.

[Mom-of-Two]

Welcome to the club

I first suggest you have your kiddos screened. Sometimes at such a young age it can be hard to get accurate test results but I would be willing to bet, out of 3 kids, someone may be positive even without symptoms. I was surprised when it was suggested my kids get screened, and even more surpriesed when one of them was positive. It is better to check, and if normal, find out the dr's recommendations for re-screening. Sadly, we have to worry about genetics

I started out in a shared kitchen- still preparing food for my kids, but me and hubby ate gluten free meals. I had a separate strainer for pasta, a new cutting board, etc but still had gluten in the kitchen. I thought this was ok. I was making dinner once and stirred my gluten-free pasta with the spoon I was cooking the wheat pasta with it was then I realized how easy it actually is to do, even when you are aware and think you are doing it all safely! We made the decision to remove gluten all together at home. About that time was when we discovered my oldest was celiac as well, so next day I got a big box and off it all went we got a new cast iron skillet, new utensils, pasta pan, got rid of anything obviously unsafe, new toaster. Our pans were less than 6 months old, and nice stainless steel so we were able to keep those (but did replace the pasta pot).

It is easier for me with two of us to make sure our soaps, lotions, chap stick, etc are all gluten free. ALSO--- you need to check medications, gluten is used to bind things. I made lots of calls, Target emailed me with gluten info for their allergy, headache products, etc. you must be very proactive in calling and emailing- don't guess.

I think a vitamin is a great thing, probiotics, especially vitamin D and many times iron or magnesium. But, what's even better is to have your vitamin levels checked to get a baseline, and they will retest in 6 months to see if they've corrected themselves (as your gut heals, you will absorb your vitamins again). I was found low in vitamin D, iron, and folate at first- all excellent 6 months later. My 8 year old's vitamin D level tripled in 6 months too

I use Red Apple lipstick when I wear it (which is rare!) but they also make a chap stick/balm that is njce. My kiddo uses Badger lips balms. Email companies, to check cosmetics, watch things like sunblock and lotions. Softsoap brand is gluten free, Dove products like body wash and deodorant, shampoos, etc. I use some nice shampoo from Target called Organix, their entire line is gluten free.

[tarnalberry]

Honestly, every time that my toddler and I are out with friends, and she (not gluten intolerant) shares their gluteny snacks, I get sick.  So, I would totally encourage a gluten free home and let the kiddos eat gluten free too.  It won't hurt them, and it makes it just that much easier not to feed them prepackaged, processed crap.

[jamiecasabellameeks]

Honestly, every time that my toddler and I are out with friends, and she (not gluten intolerant) shares their gluteny snacks, I get sick.  So, I would totally encourage a gluten free home and let the kiddos eat gluten free too.  It won't hurt them, and it makes it just that much easier not to feed them prepackaged, processed crap.

Yes, I feel like I'm just walking around in a "poisoned" home...afraid to touch anything...Sounds horrible, I know.  I just want to start over.  New EVERYTHING! :/

[jamiecasabellameeks]

I do have another question for SOMEBODY??? I know it's very probable that 1 out of my 3 kids has Celiac. If I remove gluten from my home, do I need to remove it from their lives completely? Like at daycare, everything??  Because won't they be more sensitive to gluten after primarily removing it?? 

[Celiac Mindwarp]

The other thing to mention is that if you plan to get your kids tested they will need to still be eating gluten, so you might want to hold off with them until they are tested. I think it can be hard to get definitive testing for little ones, someone here may be able to elaborate.

Good luck, welcome, come and ask lots of questions (and rant occasionally if necessary )

[nvsmom]

Welcome to the club... I think someone around here was handing out "secret decoder rings".  

 

I'm sorry you hit withdrawl.  Hopefully you are most of the way through it and will become human agin soon. It's a nasty time.

 

L-Glutamine is a good supplement to encourage healing of muscles (ie, small intestine). I used it in the past when I was weight training and it made a huge difference in my muscle recovery time, so I assume it's helping my gut too.

 

Did you get checked for low nutrients? Calcium, B's (B12), iron and ferritin, D, and potassium are often low in celiacs. Thyroid issues are common too so if you have lingering symptoms, you might want to get that checked out too (TSH, Free T3 and T4, and TPO Ab).

 

I did not replace many things in my kitchen. i got rid of a mesh strainer and some wooden spoons. I bought myself a new cutting board. Otherwise I just scrubbed out my drawers (you know how crumbs fall in) and cleaned out my toaster oven reeeeaaaally well. I don't believe I have cc'ed myself so I think it was enough.

 

I would consider making your household gluten-free after testing your kids. It does make life simpler for everyday food prep. Even if your kids test negative (like mine) you might still want to make them gluten-free - gluten causes inflammation in most people, it's more of a matter of how much inflammation and how much it affects their health. Even though my kids appear to not be celiacs, they have shown improved health on the diet.

 

Removing gluten is not proven to cause an increased sensitivity to it to the average person (I believe) but people who have a sensitivity to it often react more strongly to it as time goes on. If your kids do react more strongly after being away from gluten, I would take that as a sign that they should not be eating any at all.  You could simply make them gluten-free for better health (as long as you are not replacing starchy/wheaty products for gluten-free-processed products) ... I believe humans were not designed to eat grains in the quantity that we currently do... I say this after I ate gluten-free pancakes for breakfast.  LOL

 

It's a process. If your kids are not having health problems, take time to switch them to gluten-free foods. I went gluten-free in June but my kids weren't gluten-free until October. The slower transition made it a bit easier for them.

 

Good luck and best wishes!  

[MicheleR]

Thank you for this posting!  I got my call yesterday that my biopsies last week were positive.   I have an appt with a nutritionist tomorrow morning.  I have gotten alot of great info from this one post!   PS--where's my secret decoder ring? 

[RyeSnake]

I have been Celiac for alittle over ten years now.  Thyroid was also a problem for me that did not come out until I was found I had it.  Since I've been on the T meds and watch the diet I live with it pretty well now. My ex-family doctor did not catch my thyroid problem but my allergist did and refered me to a Endocrinologist who now follows me.

I make MISTAKES now and then believe me but after about 6 months into it I learned the heard way of things to avoid and it gets easier

 

Barley is one of those no no's.  Its in all beer and some resturants cook food in it (clams). They make a gluten free beer now for us folks. Open Original Shared Link

Trust me I miss my beer and if I could take barley I have my regular beer.  Know it looks now like a long road but it is do able and you get into it and best part is you start feeling really better.