Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Biopsy Confirmed=No Longer In Denial...please Help!
0

13 posts in this topic

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!

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

B) 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. 

0

Share this post


Link to post
Share on other sites

Have you checked out this?

http://www.celiac.com/gluten-free/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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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! :/

0

Share this post


Link to post
Share on other sites

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?? 

0

Share this post


Link to post
Share on other sites

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 :) )

0

Share this post


Link to post
Share on other sites

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!  :)

0

Share this post


Link to post
Share on other sites

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?  :rolleyes:

0

Share this post


Link to post
Share on other sites

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. http://www.bonappetit.com/blogsandforums/blogs/badaily/2013/02/gluten-free-beer-tastes-good.html

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,697
    • Total Posts
      921,781
  • Topics

  • Posts

    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,702
    • Most Online
      3,093

    Newest Member
    Gigi Fagon
    Joined