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New Member- Intro

frozen

By frozen
in Coping with Celiac Disease

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frozen Newbie
frozen
Posted

Hi Everyone,

 

I have been reading around on this site for few day and decided to join.

I am 27. Was officially diagnosed with celiac (with biopsy and all) in 2013 March. I had previous (2009) positive antibody level of > 200 but never bothered to seriously follow the diet. Had multiple failed attempts on the diet when tried in the past.Symptoms include constipation, lethargy and anemia. Had poor support from people around me who just thought I was just being picky or looking for attention until my husband came along and supported me with all he can. I am not super sensitive to gluten but that also leads to some unknown gluten ingestion at time (or at times worries of whether or not I have had any gluten). I have been strictly gluten free for couple months now. No GI symptoms at all now but the lethargy  continues. Now being investigated for Hyper parathyroid.

 

 

Motivation - Overall health, to be there for my loved one and to start a family (after I get my health under control)

 

I am trying my best to figure this new diet out. Household is gluten-free.

 

I have got some really helpful information from this site. I have read the newbie info 101- super helpful.I am looking forward to getting to know more about this autoimmune disorder and to  learn from my fellow celiacs. And above all I am hoping to get good support and a place to come to cry and vent without feeling judged.

 

 

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi Frozen and Welcome to the Forum!

 

Congrats on being a dedicated gluten-free healthy person!  :)  It is great to have someone in your life who fully supports you - can be sooooo important!  (Hang onto that one! :P ) 

Just wanted to share with you that while I had no obvious symptoms prior to my diagnosis, once I was gluten-free for just 3 months I had a minor glutening incident and ate a teeny, tiny bit of tabuli that had bulgar wheat in it.  Not even half a bite... just a tiny taste.  And the result was just like getting food poisoning... severe bloating, cold sweats, shakes, loss of appetite, foggy headed, and general ickyness for about 5 days.  So don't be surprised if you become more sensitive to gluten after you get it all out of your body.

GF Lover Rising Star
GF Lover
Posted

Hi Frozen, and Welcome to the Forum.

 

You certainly came to the right place !! and so great to hear that your husband is so supportive, its so important.  I'm glad to hear that you've read the Newbie thread, it has great information.  We are here to support you also.  Ask anything you need and vent at will.   :lol: One last thing.  Learn patience.  it sometimes take over a year of heal our bodies.  And keep on top of your thyroid, that is probably why you are lethargic.  

 

Welcome Again,

 

Colleen

LauraTX Rising Star
LauraTX
Posted

Welcome, Frozen!   I am glad to hear your hubby is supportive, mine does the same, he has even learned how to read labels and stuff and advocates for me when we go places, he has my back!  This really is a great supportive place to be, feel free to search the forums for past discussions and ask any questions you need! :)

frozen Newbie
frozen
Posted
  • Author

Thank you everyone. 

 

I does make a huge difference to have someone supportive at home. I have couple co workers who are also celiac/gluten intolerant so I have some support at work from staying away from temptations

 

NoGlutenCooties-Quite honestly I would actually prefer to be little more sensitive so that I now every time I accidentaly gluten my self. As I am now, I fear that I am glutening myself all the time (just over thinking) because I don't get any GI symptoms any more. Either that or I am doing good at avoiding gluten  :D - Well I guess blood work will clear that doubt. 

 

 I am not very happy about this whole hyper parathyroid thing. I was actually reading a post from a member here and found out that It could be difficult to get into doctor's office. Good thing I am practising for being patient with celiac :) . 

 

By the way - Can you guys please clarify when should I go for my first blood work to check for antibodies? I understand it takes time for the antibody count to lower but I just want to see if my diet is effective. My dilemma is that I don't want to go too early and get discouraged by thinking my diet isn't working but I also want to make sure that I am doing things right  (Don't want to wait for a year to find out that I was getting contaminated through something). And all of this is again tied into the fact that I don't feel any glutening symptoms or maybe I cannot recognize them being new to all this. I did have a bad headache that lasted 2-3 weeks when I first eliminated gluten from my diet but there has been nothing since then.

Any suggestions?

 

Thanks 

kareng Grand Master
kareng
Posted

Thank you everyone. 

 

I does make a huge difference to have someone supportive at home. I have couple co workers who are also celiac/gluten intolerant so I have some support at work from staying away from temptations

 

NoGlutenCooties-Quite honestly I would actually prefer to be little more sensitive so that I now every time I accidentaly gluten my self. As I am now, I fear that I am glutening myself all the time (just over thinking) because I don't get any GI symptoms any more. Either that or I am doing good at avoiding gluten  :D - Well I guess blood work will clear that doubt. 

 

 I am not very happy about this whole hyper parathyroid thing. I was actually reading a post from a member here and found out that It could be difficult to get into doctor's office. Good thing I am practising for being patient with celiac :) . 

 

By the way - Can you guys please clarify when should I go for my first blood work to check for antibodies? I understand it takes time for the antibody count to lower but I just want to see if my diet is effective. My dilemma is that I don't want to go too early and get discouraged by thinking my diet isn't working but I also want to make sure that I am doing things right  (Don't want to wait for a year to find out that I was getting contaminated through something). And all of this is again tied into the fact that I don't feel any glutening symptoms or maybe I cannot recognize them being new to all this. I did have a bad headache that lasted 2-3 weeks when I first eliminated gluten from my diet but there has been nothing since then.

Any suggestions?

 

Thanks 

 

Here is what the experts say:

 

 

Open Original Shared Link

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.

eers03 Explorer
eers03
Posted

Welcome to the board and please give your supportive husband my best.  I am so glad you are now taking your diet seriously.  No cheating. No "once a month" treats.  Never.  Ever.

 

I highly recommend going to Amazon and ordering "Gluten-Free Grocery Shopping Guide 2012/2013" or its newest version.  It is the most comprehensive guide listed by product, brand, and sometimes grocery chain on every item you can possibly find in a store.  If you can find it in this book, its safe.  If it is not, buyer beware.  My gluten free dietician at Mayo Clinic made me aware of it when I was diagnosed.

 

Also, download the Shopwell app if you are an iPhone user.  In a pinch if you are at the store and are still unsure after reading the label, scan the barcode and it will tell you whether or not by its best estimates if the item contains gluten.  You said it up to do so in your profile.  If you were a heart patient, you could make it scan for high levels of sodium, etc.

 

If you have not already done so, you may consider talking to your doctor about Vitamin D to ensure that your calcium is in fact being carried to your bones.  We celiacs tend to have issues with this early in diagnosis.

 

Anyhow, enough from me...  You are in the right place.  I really believe people in this forum have a genuine interest in showing others with this diagnosis that life goes on and you can still thrive!  We just have to tweak a few things.  If it were basketball, I would consider it a half-time adjustment :-)

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bartfull Rising Star
bartfull
Posted

Hyperparathyroidism can be caused by low levels of calcium and vitamin D. Because you had celiac for a long time, you haven't been absorbing nutrients from your food the way you should. My Mom, who also had celiac had hyperparathyroidism and had surgery for it. After that she was OK. :)

 

But you should ask your doctor to test all your vitamin and mineral levels. You could quite possibly be low on others, especially B12.

bartfull Rising Star
bartfull
Posted

I just read my last post and want to clarify. After the surgery Mom WAS fine, but she still had celiac of course.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

As far as when to retest, my doctor wants to redo my blood work at 6 months.  I remember reading that the antibodies have a half-life of approx. 3 to 4 months.  Which means after 3 to 4 months you have approx. half the number of antibodies you did when you started, then half of that after 3 to 4 months, etc.  Although I'm sure that's just an average, as everyone is different and everyone's body is either more or less efficient at getting rid of the little buggers.

frozen Newbie
frozen
Posted
  • Author

Kareng/ NoGlutenCooties- Thank you for the information. At least I am a timeline now to put me at ease.

 

eers03-  Thank you for the great resources. I wasn't aware of these. 

 

bartfull- Thank you for sharing the experience of your family member regarding the parathyroid. It encouraging to hear a positive result of the surgery.  My  endocrinologist referred me for surgery right after she saw me because my age puts me at a higher risk. Also thanks a lot for explaining how I might have ended up with this condition. I definitely remember doctor asking me to take both vit D and Calcium back in 2009 (my thyroid scan showed no problems at that time). Probably my body overcompensated and now I am stuck with high Calcium (getting sucked out of my bones) and low Vit D. I am proud of the fact that I did continue to take all multivitamins and Iron last year so rest of teh levels are within normal ranges or maybe low normals- But still Normal- yay 

 

I have just added the following portion of the comment just for general information on how a hyper-parathyroid can affect someone with childbearing age and what doctors recommended in my situation. 

 

As for my my blood work levels, I have extremely low vit D and very high Calcium (which makes me super tired all the time). So I was asked to stop vit D and Calcium supplements because Vit D helps absorb the Calcium. So if I were to take vit D, my calcium will shoot even higher or my body will simply not absorb any vit D. Now if a women was pregnant then these changes in levels can then affect the fetus is following ways :

1. No parathyroid gland formation

2. Tetanus

3. Fetal death (in some rare cases)

And these are the reasons why they suggest women in child bearing ages to get the over active parathyroid removed before pregnancy or in most of the cases this has to be done during pregnancy as it is known to cause severe complications (as told by my doctor). I should make it clear I found only 1 medical journal where they had operated a women for this.I have found no other studies.

 

Thanks again for all information you guys gave me. I apologize for this long post.

tifftiff4 Newbie
tifftiff4
Posted

Well, hello everyone. After reading around on this site I decided to join and get some support of fellow comrades. I'm a married mother to a two year old who recently been diagnosed with Celiacs disease after being sick over the course of a year. It's nice to finally have an answer r to my constant pain and discomfort. All this happened around thanksgiving time. So now I'm here and trying to get use to this "gluten free" way of life. So hello everyone...I welcome any suggestions any or all of you might have.

bartfull Rising Star
bartfull
Posted

Hello Tifftiff, why don't you start a new thread, introduce yourself, tell us about your testing and symptoms, and then everyone will chime in with suggestions. :) My first suggestion is to read the Newbie 101 thread in the coping section.

 

And welcome!

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