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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

5 Months In; The Good And The Bad
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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.

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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!

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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) :)

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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).

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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

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

LOL!!!! :lol: :lol:

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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.

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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