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

5 Months In; The Good And The Bad
0

7 posts in this topic

I was diagnosed in June. It feels like a lot more time has passed though! Things really do get better....there are little speed-bumps here and there but I am moving along and feeling pretty good for the most part.

The good:

1. My main issue was malabsorption. Severe anemia, insanely low calcium (to the point of hospitalization in 2008), magnesium, vitamin D, B-12. My last IV of iron (the doctors could never figure out why the pills didn't work.....yeah....), was in December of last year. Normally my numbers would have gone down, down down since then, but they are actually up now! My hemoglobin is a rocking 12.5. Woot! I've never been in the double digits this long before. (for reference, before I started getting iron infusions years and years ago, my hemoglobin was a 7, ferritin was a 2). My calcium and D and b-12 are in the normal range. Still taking big doses but hoping for improvement by end of my first year.

2. Since around 2008 I struggled with feeling out of it... my heart racing sometimes, feeling like I was walking around on a cloud, not connected to my surroundings, feeling faint. So much better now! I believe the vitamin D has a lot to do with it. Still have occasional feelings of faintness or cloudiness, but much better.

3. Fatigue/Insomnia -- much better! I used to be able to sleep and sleep (was sleeping badly, waking up a lot)....and I still do like to sleep in sometimes, but often I can't sleep more than 7 hours or so. I just automatically wake up. I don't wake up many times per night as often. Once I drag my comfy butt out of bed I'm pretty alert.

The bad:

1. Lately getting annoyed by the dumb comments....I guess at first it was all brand new and I didn't mind explaining Celiac and gluten to people. But now I'm just annoyed when people try to tell me "you can have just a little bit...no big deal!" Really? I just had to explain to you what gluten and Celiac are and you are suddenly an expert on what I can or cannot eat?? Or "I'd just DIE if I couldn't eat bread..." (Trust me, lady, bread is the least of my worries. I can easily avoid bread). Most people are understanding and supportive. This is just a rant I felt was better to be placed here than on facebook, lol.

2. Not looking forward to going to my friends or family member's houses for parties and such. It's just a minefield out there. I'm not looking forward to thanksgiving at all and I always did before. ....I think I will find a gluten free gravy and bring that. Turkey is no good without gravy! :) But I'm sure the turkey will be stuffed with the usual stuffing. I won't eat the stuffing of course but I wonder if the breast meat would be contaminated. (probably?) If I have time to make a side I will do that too. I'll try to focus on the people and not the food. :)

3. Just generally missing the freedom of not having to think so much about what I eat. Some days are easier than others. It gets me down sometimes. Eating at home is a breeze. No trouble there. I travel quite a lot and that is where it gets dicey. I am silent celiac I suppose, as I never had major gut problems after eating gluten, so if i AM being glutened I have no idea. It's a little scary still.

4. One big WHOOPS moment a few months ago where I took a big bite of a milky way bar thinking it was safe. I had snickers bars and milky ways mixed up in my mind. doh. Weirdest part was when I threw it out after looking at the label and then went back to the machine to get a snickers and I hit the number for the milky way again! Doh! Gave up. Talk about a ditzy moment.

5. Slightly worried that I might have RA. My mom has it. Having some aches and pains the last 2-3 months or so. Hoping it is not the case. Maybe it's a celiac thing? Trying not to be a hypochondriac. Don't want to see a doctor but will in a couple of months if it continues. Hoping it's just carpal tunnel or something similar.

6. Unusually sore boobs during PMS and acne that is worse. Been reading online and seems like zinc can help with the acne so I just started trying that. I am probably low on zinc anyhow. Not sure if my hormones are just out of wack or what...thinking of seeing a doctor but I am so tired of clueless doctors. I have no idea if it's related to gluten or lack thereof. Blah.

Thanks for listening. :) If anyone has any advice lemme know. Some of you have been through all of this I'm sure! Somehow my bad list is longer than my good list but I actually feel like the good is outweighing the bad! Just kinda kept listing stuff.

0

Share this post


Link to post
Share on other sites


Ads by Google:

The "BAD" #'s 1, 2, and 3...oh how I feel your pain on those!!! "I don't know how you live without gluten"...well, it's pretty easy after you figure out it makes you sicker than sick! I soooooo miss the convenience of just grabbing something for lunch while out and about. I have days where I most definitely feel deprived. I spent 10 days in Italy where I watched my mom have bread with every meal, and enjoy croissants...it felt very unfair :mellow: I often dream about things like grabbing a draft beer at a concert, having an ordinary grilled cheese with my friends daughter, eating Rold Gold pretzels because I can - I know there are substitutes for these things, but it's not the same. I'm going out of town for Thanksgiving and also totally dreading it, wondering what my brother will have for me that I can actually eat, other than turkey? While I rarely complain about my diagnosis, sometimes I just wish I was "normal" haha!

0

Share this post


Link to post
Share on other sites

I agree! I miss being "normal" sometimes too. I am past the overwhelmed stage but I miss not having to think about what I'm buying and eating.

Good thing I like salads and fruit, because those are easy go-to-items when out and about! I just bring my own dressing or if at a restaurant I ask for a little bit of olive oil instead of dressing) :)

0

Share this post


Link to post
Share on other sites

Yep. Don't let the comments get to you, it will drive you mad if you do.

As for the turkey don't do it if its been stuffed. Major CC right there. What i'd do is cook up a bird for myself and take a little with me with whatever sides ya want. That way you have leftovers (turkey does well in chicken dishes and whatnot).

0

Share this post


Link to post
Share on other sites

The "BAD" #'s 1, 2, and 3...oh how I feel your pain on those!!! "I don't know how you live without gluten"...well, it's pretty easy after you figure out it makes you sicker than sick! I soooooo miss the convenience of just grabbing something for lunch while out and about. I have days where I most definitely feel deprived. I spent 10 days in Italy where I watched my mom have bread with every meal, and enjoy croissants...it felt very unfair :mellow: I often dream about things like grabbing a draft beer at a concert, having an ordinary grilled cheese with my friends daughter, eating Rold Gold pretzels because I can - I know there are substitutes for these things, but it's not the same. I'm going out of town for Thanksgiving and also totally dreading it, wondering what my brother will have for me that I can actually eat, other than turkey? While I rarely complain about my diagnosis, sometimes I just wish I was "normal" haha!

You went to Italy?! I've always wanted to go there, but am hesitant because of the gluten issue. I've heard they are celiac-conscious, is that true? What did you eat then?

Pshh, weird is the new normal. Haven't you heard? :P

0

Share this post


Link to post
Share on other sites




Pshh, weird is the new normal. Haven't you heard? :P

LOL!!!! :lol: :lol:

0

Share this post


Link to post
Share on other sites

I love the "Wierd is the new normal" comment too!

I got through thanksgiving just fine. My mom stuffed the turkey with a wild rice/mushroom concoction and it was good. Didn't have gravy, pies or casserole but that's ok!

I am about 5-6 months in now and only had symptoms here and there before diagnosis -- nothing that seemed abnormsl (hindsight is 20/20). can you become more sensitive just this far into being gluten-free? I think I got glutened a few days ago at a company event. I was really careful and interrogated the guy but I have had stomach pain/ discomfort since that night. (Ate a little chicken, raw veggies, some cheese). Just exhausted too. No fever or anything, so I don't think it's a bug. Hrmmm.

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
      104,648
    • Total Posts
      921,603
  • Topics

  • Posts

    • You are right, the tests could be invalid.   All the celiac tests require you to be on a gluten-containing diet.  It is up to you to decide if you want to go gluten free.  You can do it.  Believe me, I know.  Hubby is not officially diagnosed.  He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP.  It worked though.  But he would be the first to tell you that I have had way more support in terms of family and medical.    We think he has it.  Both of our families are riddled with autoimmine disorders.  I am the first to be diagnosed.   My Aunt went gluten free per the advice of her Chiropractor.  Her other doctors never suspected celiac disease.  The diet obviously worked for her.  Her daughter (my cousin) is a nurse.  She had an endoscopy but they did not check for celiac disease.  She chose to go gluten-free too since it worked for her mom.  Both will not do a gluten challenge.  However, my diagnosis has helped them get proper medical treatment.  My Aunt is very active in a celiac support group.    Now everyone in my family knows about celiac disease.  My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease.  You can develop additional autoimmune disorders at any time.   So far, a few other members have been tested.  No one else had had a celiac disease diagnosis yet.  Time will tell.  If I can save someone from the misery of struggling to get a diagnosis, then I can feel good.   Now, an official diagnosis will help you adhere to the diet .  You can get follow-up care.  Get checked for other things like SIBO, H. Pylori and cancer.  But ultimately, it is up to you.   Whatever you decided to do, please consider a family health history chart.  You might someday help a grandchild.   The stool tests?  In all my research, leading celiac experts do not recommend them.  http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/ gene testing?  Some 30% of the poulation carries the celiac genes.  It just tells you that you have the chance to develop celiac disease.  It can not diagnose you.    
    • The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
    • I think the gene tests are accurate.  Not sure if thier interpretation of them is.   If you actually think have Celiac, you need to know that.  You  need to know how careful you must be.  You need a diagnosis to get gluten-free food in hospitals or nursing homes (if you can find one that does gluten-free food).  Because thsese "stool tests" are not medically accepted, it is unlikely that a real medical facility will consider you to have Celiac.   http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/
    • Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel?  Had you been gluten free already?  
    • Thanks cyclinglady ... just wondering, do most of the people on this forum believe the Enterolab stool / gene testing to be non-trustworthy? Or are you just recommending a diagnosis from my MD so that she is also treating me with full belief/knowledge of my condition? I've been gluten free now for 2 weeks - by the time I get in to my doctor, she orders the bloodwork and I get to a lab it could be another 2 weeks before the bloodwork is done. From what I understand, just a month of gluten free eating could skew the results of the blood test. Supposedly, the stool tests are much more accurate. I hate to go backwards and start eating gluten again just so I can have a blood test done that may or may not substantiate the results of the stool / gene testing. I'm so confused ...
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,653
    • Most Online
      3,093

    Newest Member
    KerryO
    Joined