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1 Month :)
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14 posts in this topic

    One month yesterday!! (I just looked it up!) And I feel so much better!! Not 100% but so much better!! I still wake up with leg cramps, but I am NOT running to the restroom all the time and I have more energy, altho I do feel really tired during the middle of the day, like I want to take a nap. In fact I did the other day!! I have NEVER been a napper before.I feel better after the nap. Other than that and a lil constipation I am doing great!! I want to get on some Probiotics , still am going to see the Gastro guy on the 6th. Not sure why at this point but will talk to him. Thank you all for the great support!! I love this place!! :) I am amazed at myself!! I also will go back to the Dr, Because I still have a rash on my back, losing hair and my toe nails and also the white tongue thing. But feeling better is wonderful!! :) 

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Party?

 

Hell Yes!

 

One Month with all that improvement....NICE :)

 

I am so pleased you are improving quickly....you are awesome...hang tough!

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Congratulations. Keep up with the high spirit, and don't get discouraged if some days feel harder again. Healing is through a curve just like learning.

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Thanks !! Yes I am amazed I feel so much better!!! It is such a load off me knowing what my problem is. Now I can go out and eat and not have horrible pains and stuff , I am amazed!! Now I will get to my other issues when I see the Dr. Next week. At least I feel better! I may not be 100% healthy but I feel soooooo much better!! Even my friends can tell the difference! I cannot w8 to talk to my Dr. I have not seen him since I was Dx'd ... His office called and told me, so I have not talked to him about it as of yet .... 

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This is fantastic news:)

Great to hear you are getting improvement so quickly.

Your positive attitude on the board in the last few weeks has been lovely, I am sure you will continue to improve

Mw x

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Woo Hoo!

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Thanks everyone! I am so very happy to be here!! I have learned so very much!! Thanks!!

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Congrats!  It is great to be feeling better!

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skidding in late.............been a zombie for a bit there.............congratulations on your one month!  Also add you have been a wonderful fun additional to the board and I am glad you are here and beyond happy to know you are improving quickly!

 

Hip Hip Hooray for You :)

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I am so glad you are feeling better. Isn't it wonderful to feel GREAT?!  :D

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great news!  congratulations!  :D

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Well Thanks e1 :) But sadly now I think I am having a set back! I have had some big "D" problems the last few days!! Like horrible! I am trying to figure out what the problem is!! I am thinking it may be Dairy ??? I just don't know... I have an appt with the GI Dr. The 6th. Hoping to get to a nutritionist , or dietitian or someone to help me.... I have lost 25 lbs in the last month ... But I am still feeling better, I am hoping I get more answers from Dr's ... But until then I will be very careful of what I eat. To tell you the truth, I am afraid to eat anything when I am out. I go to restaurants with my friends and don't order anything. Came home from a Vaca 9 1/2 hr drive and didn't eat anything . This is the same thing I was doing before I was DX'd ... when I am out I won't eat anything. I am supposed to go to  Mackinac Island with a couple of friends for 3 days. I am going to be afraid to eat anything... Not really sure If I should go or not. It is payed for. Maybe talking to the Doc will help. Here I was doing so well!! Just don't know!! I did buy some probiotics today from The Whole Food Store .... :) Trying everything I can :) Thanks for all the support!! :) 

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Well It has been 2 months :) Yay for me!! My set back was from a restaurant I ate from  :( , But I went to Mackinac Island and there was a Pizza place that had Gluten Free pizza!! It was my first time with Gluten free Pizza!! I loved it!! They said they were very careful about how they cooked it and utensils they used. I had no problem!! :) We went back the next night I had a burger with no bun and a salad. I was going to see if the cook could microwave me a tater but all their potatoes came in frozen. I wasn't going to risk that contamination so I got a side salad. So 2 months in I am doing pretty good!! 

I am still suffering from exhaustion tho, I feel like I have worked for a week straight! Hard labor and I am exhausted! Altho I don't work! I hope that gets better soon. Seems I have my good days and bad days. Just try and plug along!! Maby it is from my trip?

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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