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heather806

Member Since 20 Jun 2012
Offline Last Active Nov 06 2013 09:35 AM
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Topics I've Started

5 Months In; The Good And The Bad

12 November 2012 - 06:57 PM

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.

Question For The Women Here (Pms-Related)

21 September 2012 - 12:31 PM

Since going gluten free I get terribly sore breasts for the 7-10 days before my period. I never had this before, they are so sore, I hate it! Hard to believe it's a coincidence, since it's been like this each month now. Anyone else experience this? I know not everything is celiac-related but it makes me wonder...

I don't drink coffee or soda, and heating pads only help for a few minutes... Trying not to take Advil or anything like that. Ugh.

Is There Any Point In Seeing A Gastro?

03 July 2012 - 07:24 AM

My primary doctor did my blood testing a few weeks ago, at my suggestion due to my friend's experience with going gluten-free, and I definitely have Celiac. (endomysial was positive, ttg-iga was a 90). He has said for me to see a gastro but I just don't see what the purpose would be. I've been gluten-free since they day I got called with the results.

Is a gastro doing to do anything other than tell me, "go gluten free" and "we'll do blood tests every x number of months to monitor your nutrients?" I could do my blood tests at my primary...it's convenient and they do it right there at the office, not at a labcorp with all the wackos waiting around. :)

I'm not sure I see the point in an endoscopy? Do you guys think it's helpful? I clearly have done a lot of damage due to being misdiagnosed for so many years. I have malabsoption problems, not the stomach pain etc.

I'm tired of seeing specialists for them to just confirm what I already know or to throw their hands up in the air and say "well, it's a mystery, take these mega-vitamins." Now that I have a diagnosis I am just not sure if they could tell me anything other than "stay gluten free." well, duh.... :)

A Little Confused...

23 June 2012 - 10:28 AM

I was just diagnosed this week by blood tests. I was misdiagnosed for years...the docs just thought anemia ran in my family etc. My only main effect from Celiac has been the terrible vitamin malabsorption. I started receiving iron infusions back around 2004. In 2008 the other vitamin issues were discovered.

I've never had the stomach pain/reactions others report here (which I am glad about of course) but now I don't know how far to take this gluten-free lifestyle. (been reading a lot on these forums and other sites)

Do I throw out my pots/pans/utensils?
Do I allow some gluten stuff in the house for my hubby? Just keep it separate?
And spices...I'm confused about spices.
Do I get any "gluten free" bakery type goods or just eat clean?
If it says "gluten free" am I ok? But what if it has the "processed in a facility with wheat etc" should I still chuck it?

I'm going through my pantry today and sorting, reading labels etc.

I feel like I don't have "extreme" Celiac like some, but since my calcium etc got so low years ago that I wound up in the hospital for a week clearly I've been unknowingly doing a lot of damage to my intestines over the years, and the docs just never tested me for it since I never reported any stomach problems.

I could eat a piece of whole wheat toast right now and I'd feel fine. It's so strange...anyone else have the vitamin absorption problem but not the other bowel issues?

Just Diagnosed (I Think)

20 June 2012 - 05:28 PM

Hello all, I've been googling info about Celiac since I received my blood test results today. My doc is on vacation and is supposed to call me on Mon to advise me about how to proceed, but the test results were:

transglutaminase IGA: 90 (nurse said the range is 0-3) !!
endomysial IGA: positive (she didn't give me a number)

There are mentions of biopsies to confirm...is there any sense in doing that given these results? I would like to avoid it of course.

I am happy to have an answer to my 4+ year-long medical mystery (low nutrients, especially calcium and iron, to the point of hospitalization for a week in 08 bc of low calcium and magnesium, and receiving iron infusions here and there). Several docs over the years have asked if I have gastro symptoms but I would say "no" and they wouldn't pursue anything like Celiac. I don't feel like I have gastro symptoms and my heart goes out to all of you who do have them!

Thanks for any input...a little overwhelmed by all the info online tonight but nice to find a forum! :)