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I Look Pregnant!
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31 posts in this topic

Greetings Patt-iAnn,

When I went to the doctor with my genetic test in hand my doctor said that I looked 5 months pregnant. Indeed I did. I had also been asked several times when my baby was due, when I was not pregnant. Now, I have a reasonable answer to that; I am just bloated by celiac.

I am 6 months grain free and am starting to deflate.

I went through times of intense hunger like you described. I also have times where I am not hungry for several days and force myself to eat. I treat my celiac with supplements, excercise, and sunshine. My diet is of notable importance. You mentioned B12 and a sublingual B12 has been working for me. I am improving and am so glad that I found out what the problem was and it can be helped.

Diana

thanks diana

i find now i only look pregnant after accidental gluten...then its right back to the way i use to be. i have been gluten free since beginning of april... and dealing with intense hunger now. i will try b 12 shots and see if that helps. i go threw days of coping and then days of depression but thats only when im out and about and cant eat on the go like the rest of my family and then find myself having to have my husband drive round and round trying to find something i can eat after everyone else has. just frustrated. i am happy though that i did find out what is wrong....even though it sucks. my life has improved so much....im happier for the most part and im not sleeping my life away i have energy again. my husband cant believe the difference. just had a bad couple days.......:(:)

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Sorry I've taken so long to respond. I've been out of touch for a while --- buying a house & the deal went south when the survey revealed the septic drain field was on the neighbor's property.

It's wonderful you are feeling so much better Patti-ann!

To answer your question, it took many, many months before I wasn't continually starving. We are each individuals so there is no set time limit & I can't remember exactly but I will say mine lasted 5 or 6 months. Now, I'm more back to normal except I eat lunch @ 11 am --- can't seem to make it till noon. Always, always, always carry safe food with you - always. That's a hard & fast rule. It's very hard to eat out & IMHO rather risky. You can always have a baked potato, just don't let them cut it before serving it to you. I didn't find anything that helped with the hunger except eating.

Try to get over the embarrassment. If people can't handle it that's their problem not yours. And as time goes on you will adjust as will your family. Especially as you become more confident & as your family learns the ropes too. And they are seeing the difference in you! That's a great sign! :)

Onward & upward!

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hey....there you are! lol

sorry to hear about the house :( ive had lots of let downs when it comes to buying houses...but i always think there will be another one and there always is!

and so the hunger pains do continue. one thing i have found to help a bit is i have switched to brown rice. seems to keep me fuller longer. question for ya..... had a bad friday night there was no food in the house and i broke down and ate half a jamaican patty. expecting to be extremely sick next couple days but wasnt that bad. bloated like 9 months pregnant, bowel irratbility and finally a bit of nausea. but nothing as bad as i use to get even with accidental glutening. do you know if the longer you are gluten free and the intestines heal does your body handle the gluten differently? not sure if im asking that question right? not that im gona start eating gluten occasionally at all but was really surprised i wasnt worse. usually i vomit my guts out next morning. just wonderd IF the body has healed quit a bit if it doesnt react so violently..as when it is extremely damaged and worn out? let me know your thoughts

welcome back!

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patti-ann, I'm the wrong person to ask about that. I have the skin presentation of celiac disease (dh) & we tend to have less GI symptoms & when we do they are less severe. But I will say once again that we are all individuals & react differently. I want to say that I have read on here where some people do like you did & had a mild reaction rather than a reaction like the days of yore. And I want to say that in those same readings the people have gone on & had more gluten & gotten the strong reaction again. You might have just gotten lucky.

Hopefully someone will come on & answer your question who knows better than I do about it.

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patti-ann, I'm the wrong person to ask about that. I have the skin presentation of celiac disease (dh) & we tend to have less GI symptoms & when we do they are less severe. But I will say once again that we are all individuals & react differently. I want to say that I have read on here where some people do like you did & had a mild reaction rather than a reaction like the days of yore. And I want to say that in those same readings the people have gone on & had more gluten & gotten the strong reaction again. You might have just gotten lucky.

Hopefully someone will come on & answer your question who knows better than I do about it.

patti-ann, I'm the wrong person to ask about that. I have the skin presentation of celiac disease (dh) & we tend to have less GI symptoms & when we do they are less severe. But I will say once again that we are all individuals & react differently. I want to say that I have read on here where some people do like you did & had a mild reaction rather than a reaction like the days of yore. And I want to say that in those same readings the people have gone on & had more gluten & gotten the strong reaction again. You might have just gotten lucky.

Hopefully someone will come on & answer your question who knows better than I do about it.

squimming itch.... you are very informative and i will look into other posts regarding my reaction....and you will not believe this....

my brother in law had been suffering from a blistering itching rash since last fall..... been to doctors had all kinds of diagnosis and prescriptions of which nothing helped.....THEN i remembered your post regarding your condition and talked to my sister and sent her your email...... they went back to docter who reluctingly sent him to a dermatoligist and had a biopsy done on the blisters and sure enough tonight they found out he has celiac.......... they have been through hell!!!!!! and back! he also has other problems like emotional sleeping etc..... all kinds of stuff that celiac affects but you think you must have a neological problem.... and because of you he got diagnosed..... i never heard of the rash before you!!!!! it sucks but is so awesome they found out... he been going crazy with the itch... and the pain!!!!!! and of course i gave them the heads up about the hunger as you did me lol thank you so much!!!!!! they so relieved to see an end in sight.....

THANK YOU!!!!!!!!!

patti ann

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Oh my! I don't know whether to be happy or sad. I'm thrilled that he got dx'd!!!!!!! And now he knows. Tell them to come on & join us --- there is a lot to learn about dh. There is a whole forum here for it. He may yet go through more hell as dh can present for up to (& maybe more) 2 years after being strict gluten-free. :( But at the end of the tunnel......

And maybe he will be a lucky one who gets over it pretty quickly. I sure hope so!

Here's the dh forum:

http://www.celiac.com/gluten-free/forum/26-dermatitis-herpetiformis/

YVW but I really can't take credit. This board is responsible. If not for celiac.com there would be multitudes of people floundering around suffering with no answers including myself. So let's give a big hand to Scott Adams who created this site.

Thank you Scott!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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