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Member Since 18 May 2010
Offline Last Active Mar 19 2013 01:01 PM

#670487 First Menstrual Period gluten-free, Feeling Aweful!

Posted by on 25 January 2011 - 07:12 AM

Actually menstrual symptoms can worsen on going gluten free as the hormones are better able to do their job.

My menstrual migraines are waaaaay worse now that my body is working better.

I guess it is the surge of hormones returning.

I think it takes a few months at least for your body to adjust.

There is a blog on here about migraine headaches that was helpful to me.

Ditto this, sadly. :)
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#665034 How Much Weight Loss Should Be Good?

Posted by on 03 January 2011 - 10:46 AM

My weight has varied a lot over the years. I wore a pair of size 10 jeans from 8th grade until age 25. Sometimes they were far too big, sometimes they were very tight. Since then in my late 20's I dropped suddenly to a size 4 and about 109 pounds (I'm 5'5). Then I gained to a size 12 and lost back to a size 4 in my early 30's. In the last couple years I jumped from size 4 to size 14. I was diagnosed on November 2nd 2010 and since then I've dropped from 172 and a size 14 to 145 and a size 10. I've been trying to estimate what my ultimate size is. Am I just at the begging of losing weight or am I getting close to the end of the natural gluten free weight loss? I know no one knows the answer but I was hoping maybe some of you could share your experience with this so I might get some idea of what to expect in the coming months. Personally I'm happy at my current weight and I don't mind losing some more. I just really don't want to get down to a size 4. I'm too thin at that point. Not to mention I'd have to buy all new clothes.

I've lost 35 pounds so far and am still losing. My whole adult life I've been a size 16/18. No matter what I did and how physically fit I've been, I could not lose weight and I was hungry all the time. When I finally got diagnosed and my gut started to heal enough to absorb nutrients, that hunger started going away and I naturally ate less. And now my diet is so stripped down that I am not eating any of the stuff I used to pig out on. (And I do eat a LOT of potatoes, and I'll be honest, a LOT of potato chips!) I'm not trying to lose weight but it's still coming off. I do still maintain my workout schedule, but I'm not pushing myself to lose, if that makes sense. I'm in a size 10 now and am looking and feeling really good. I figure my body will level off wherever it's meant to be, but it would be nice to have an idea where that is so I could buy/not buy clothes! ;)
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#650908 Should I Try To Contact Birth Parents After Testing Positive?

Posted by on 03 November 2010 - 08:18 AM

I would think that if you just contact your b.mom telling her she may have given you a "disease' that would be like any mon's worst fear coming true. Truely upsetting and shocking. And even worse because she gave you up and couldn't care for you. Since you have not had the genetic analysis of the HLA DQ gene you don't know if you inherited this intolerance from one or both parents. There is no way to tell which parent contributed to your intolerance to gluten and if you only inherited one celiac gene then only one of your parents gave it to you.

Maybe you could write her and tell her that you have wonderful parents and are living a happy and satisfying life but have no desire at this time to meet her and your half-sibs. This will not rule out being able to meet them in the future if you change your mind later on in life. Then you could feel free to tell her about your inherited problem and explain about the tests she would need to have to know if she, her other children and close relatives are at risk. There are both public and private mailboxes to protect you from being contacted as one of the others suggested.

Since she has indicated an interest in you she may have been worrying about your life since she let you be adopted.

One of my friends was adopted as a baby, After her adoptive parents died she began to look for her birth mother. Eventually she contacted her and found a whole new family of relatives. Her mother had worried about her all those years.

I second this. I do feel it's right to give her the info, but she also deserves a "cushion" of knowing more than just that, you know? Yes, you happen to have Celiac disease, but the fact that she made an adoption plan for you also means that you enjoyed xyz upbringing, xyz relationship with your parents, xyz opportunities, etc. You're not obligated to start a relationship with her, but please do give her more than just the medical facts. Good luck; I imagine this is a huge step!
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#649025 Survey For People With Celiac Disease

Posted by on 25 October 2010 - 01:32 PM

1. Sex: Female
2. Age: 31
3. How long ago were you diagnosed with celiac disease? 4.5 months ago, which was a few months after having my essentially dead gallbladder removed. Now I know why it died!
4. Does anyone in your family have celiac disease? We suspect both of my kids have it (their reaction to gluten is the reason I was ever even tested; I had no idea I had it!), I also suspect my mom, an aunt, a cousin and my grandma.
5. How severe is your celiac disease? I'm extremely sensitive, not only to gluten cross-contamination, but now since going gluten-free I've developed a boatload of other food intolerances (see my signature). Hoping and praying that as my "severely damaged" gut heals, I'll get a few foods back.
6. Is it difficult to eat out at restaurants or anywhere outside of your home? Extremely
7. Do you believe that there should be more to be done to make this disease more aware to the public? It would be great for doctors to acknowledge it, you know, maybe take it seriously? Even my GI doctor, who reluctantly diagnosed me after my biopsy, knows *nothing* about this disease. Don't even get me started on my GP or the kids' pediatricians!
8. How has this disease impacted your life? Nothing is spontaneous anymore - there is a great deal of planning involved in everything because my diet is so very restricted. The blessed silver lining is that now that my body is absorbing nutrients, I'm no longer hungry all the time. As a result, I've lost 30 pounds this year and I'm finally very near my goal weight. I look and feel SO much better. I finally understand why, despite years of a very healthy diet and exercise, I was unable to lose weight. It all makes sense now! :D
9. What do you think would make celiac disease easier to deal with? Knowledgable doctors. And clear, honest labeling on ALL food and body products. It's the little things.
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#632170 Need Some Help Understanding Weigh Loss/gain On gluten-free Diet

Posted by on 16 August 2010 - 01:05 PM

It's so confusing! VitaminDgirl- I also have the constipation side of things.

I apologize if you've already mentioned this, but are you taking any specific supplements that you've noticed helping the constipation?

So far the gluten free diet alone has done nothing for my constipation. I'm looking for examples other than adding more fiber or food choice, but instead, information on viatmins or supplements would be awesome!


I've found that a good omega 3-6-9 supplement helps somewhat. I brought the constipation issue up w/my GI doctor, and he recommended probiotics as well. I noticed a big improvement once I added those in.
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#632064 Asymptomatic Celiac, And Now That I've Gone Gluten Free Am Having Stomach...

Posted by on 16 August 2010 - 07:54 AM

Oh, I'm glad I saw this thread. I've been gluten-free for 2 weeks now. I hardly had any symptoms earlier, apart from loose stool (and weight loss couple of months back). Surprisingly, noticed my stool felt normal after 3-4 days of being gluten free. But these 2 weeks have produced such random symptoms like bloating, burning sensation at the base of my throat (acidity, I think), dry mouth and sometimes a strange taste in my mouth. I've never had these symptoms before! I'm still eating dairy products, so not sure if I've suddenly become lactose intolerant?? Apart from removing gluten from my diet, I haven't made any major changes to my diet, apart from increased intake of rice and started eating millets. Not sure if these are causing the problems? I'm still using the my wheat protein shampoo and Aveeno moisturizer (has oatmeal) though....

Ohhhhh yeah, those need to go. They can absolutely cause you problems. Sorry. :(
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#625452 Restuarant And Post-Glutening Advice

Posted by on 21 July 2010 - 07:21 AM

Are you letting the restaurant know after you've been glutened? I was glutened at a Ruby Tuesday, despite their gluten free menu and me going over my needs with the server AND the manager. I got online the next day when I realized I'd been gotten, and filled out a customer comment form. Within 12 hours the regional manager called me and spoke with me at length. He was horrified, and promised me that he would be conducting more intensive training on gluten free procedures at ALL the Ruby Tuesdays in his region. He thanked me multiple times and explained that unless they get feedback like this, they don't realize there's a problem and they end up losing business. He also sent us several meal vouchers. So absolutely let the restaurant know - it can only help!

As far as recovery, I just lay low as much as possible. If I do continue my workout routine I make it low-key... if I feel bad enough I skip the workout and just give my body time to work on the glutening. Pepto helps, and I too do lots of water and fruit fiber. Feel better soon!
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#625427 A Weeked Long Family Vacation

Posted by on 21 July 2010 - 06:00 AM

***I just realized the typo in my heading. Oops... weekend, not weeked... LOL. That's what I get for posting at 2am! Sorry!***

This past weekend, a cousin of mine got married up at Lake Tahoe. I tried to prepare as best I could for my food-challenged weekend. We started with a hotel with a full kitchen...good choice. Then we shopped before the weekend, preparing for and purchasing all of the gluten-free items I thought I might want/need. To save money, we also brought up food for the kids and my sweet boyfriend, who is so supportive. We got there, unpacked the items onto separate shelves in the pantry and fridge... gluten on the bottom, "mom food" on the top, etc...

It all sounded good. But here was the problem...I felt left out. :( Ok, maybe I'm whining, but I decided that I would simply eat back at the hotel before the family dinners and just enjoy an iced tea and the families' company at the restaurants. But I was asked so many questions by my family members! (There were lots of not-so-close relatives there, and my disease seemed to be the highlight of conversation, complicated by my not-eating choice being so not-normal!) Ok, so maybe restaurant paranoia was a little over the top, but I had a great dress picked out to wear, and if I "got glutened", I would have a giant pot belly, and then i wouldn't have been able to wear that little black dress I'd worked so hard to look good in the day of the wedding!

So basically, I'm early in my diagnosis, finding out that I am VERY SENSITIVE (like an unclean plate can send me into a 2-day nightmare), and scared of other people's CC! I mean...SCARED! I am terrified that a waiter will grab a bread basket before taking my possibly gluten free meal to my table and cc me! Or maybe a crumb will jump onto my food from the crunchy bread an unknowing family member sitting next to me flings at me while buttering their little piece of poison! Again, I know I'm going over the top and paranoid, but I'm really scared!

We got home from the weekend, and my boyfriend and I immediately began thinking about where we "went wrong" and how to "do it better next time." So thanks for listening to my rant, and I would love any suggestions on how to look and eat more "normal" while on vacation/eating out. At home, I am good. I got this. I have most things figured out, or am working on it. I am not getting glutened at home anymore, most of the time. Within my 4 walls of "controlled space" I have a comfort zone. This disease is really a challenge. I suppose the enormity of my diagnosis has hit me heavy all of a sudden, and I am trying to come to terms with this new chapter in my life.

In addition to my general question, here are some more specific ones...How do you all "deal" in public? How does your family support you while on vacation or eating out? What small changes can you make to have a positive experience at a restaurant? Is eating out always a roll of the dice?

Thanks all! I am off to try to sleep. I got accidentally glutened by an evil orange sherbet at my grandparents house this evening and had to take one of my anti-spasm pills my GI doctor prescribed to stop the pain. It worked, but I ended up sleeping from 8pm-1am, so here I am wide awake at 2am writing this! O the joys of Celiac disease! :(

Ugh, I'm dreading travel. We're going to an out-of-state wedding in September. My MIL graciously is covering our hotel stay. The other day she asked me what I plan to do about food for that weekend. I said that I hope the hotel room has a fridge and microwave, but if not we'll bring a cooler and I'll get by eating cold stuff all weekend. She is highly dubious of my "disorder" and considers me a hypochondriac in general... but her response to me really bothered me. She put her hands on her hips and said "Julie, have you ever thought of just joining the rest of us for the meal at the wedding, and having restaurant food for the weekend? Can't you just suck it up and deal with a tummy ache for a few hours?" while she rolled her eyes. I'm not even kidding. I stayed calm and said "It's not like that; it's not a "tummy ache"; it's 3 to 5 days of pretty much wanting to die from the pain." She rolled her eyes again. She has no time or patience to be educated on what Celiac really is. I wish my husband had been there at the time because he's getting really good about stepping in and putting people in their place.

Anyway, I too am very much struggling with the social aspect of Celiac. I'm not comfortable joining people and not eating. It's very awkward for me still. I love hearing other people's experiences and suggestions!
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#624417 Is A Long Recovery Normal?

Posted by on 16 July 2010 - 07:43 AM

At any rate, we scheduled a fresh raft of blood tests for next week including zinc and vitamin K which I hadnít previously been tested for. I have a constant worry that my symptoms of tingling and fatigue are early signs of MS, so I brought this up with my doctor. I havenít had any optic or balance/co-ordination issues, and she looked at the back of my eyes to make sure everything looked okay there (it did), though she said if the tingling continued that I should see a neurologist. She said to me she didnít think any of my fatigue or other issues were MS related, though now because she debunked a few things which I thought I could attribute to Celiac, I feel kind of worried again. On the other hand, I know that she was getting a lot of information from her database (which she printed off for me, and it seems to be the more obvious symptoms of Celiac) so Iím not sure what to think now...

Funny you mention this. Just a week ago I went to my doctor concerned about MS too! (I have an aunt on each side of the family with this.) I've been having numbness/tingling in my right hand and right foot, strange headaches/shooting pains in my head, fatigue. The doctor was concerned too and ordered an MRI for that same day. Results? Completely normal, praise God! When I mentioned to my dr. that I know neuropathy can be a part of Celiac, she seemed surprised and said "oh really? I didn't know that!". That doesn't give me a lot of confidence in her ability to treat me as a whole person, ya know? :blink:

Anyway, she wanted to refer me to a neurologist, but at this point I'm satisfied that I do not have MS or a brain tumor, so I'm going to wait it out and pray the diet change resolves it. Just wanted to let you know you're not alone!
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