New To Site, New To Maybe Celiac, On Overload

[maltobella]

Hi...

 

I'm new to the site and today have been feeling just down about everything. I've had "stomach" issues since childhood. I'm 37. Last year an allergist tested me for food allergies skin testing. That turned into blood testing...  I had a positive deamidated gliadin iga blood test. My doc said that indicates celiac and sent me to a GI who said I could do endoscopy if I wanted but wanted me to take Miralax. He was leaving the practice so I'm meeting with another GI. Two nurses in the practice told me I should do the endoscopy. I already stopped gluten and am feeling better so I don't know what to do. But I agreed to meet with the new GI to discuss.

 

At this point I'm frustrated with doctors... have gone for years for various weird pains and test results where nothing seemed to jive. Elevated liver bilirubin for no reason, blood in urine for no reason, joint pain for no reason. Abdominal pain for no reason. Diarrhea, constipation for no reason, bloating to the size of a pregnant woman for no reason. Nausea all the time for no reason. I've lost 2 teeth completely and have a ton more dental work required. Blah blah blah. So I think this blood test is a good sign to finally figuring out what's wrong but it still feels weird to have a GI say take Miralax, cut out gluten "if you want." So that's just one part of it.

 

Everything I'm learning is through the Internet. I feel like I just need to eat things that are gluten free and I'll be ok? Is there a type of doctor I should find to answer my questions? Should I find a nutritionist?? How long til I feel much better? I have other medical issues that I suspect might be related but maybe they're not? How in the hell do I completely avoid gluten? I ate oatmeal after being 7 days gluten free. I got sick after the oatmeal. But it took me a day of wracking my brains to figure out what I ate that did it. I didn't realize oatmeal could do that. I'm starting to fear eating anything that isn't labeled gluten free. It seems like 3 days is the magic mark for me after eating gluten til I feel like I've gotten over it. I'm able to wake up in the morning now which used to be such a challenge! I bet that was the gluten but I'm not totally sure. It's really all so confusing.

 

Also, the lack of "support" really kind of stinks. I've told people close to me. My other half has been great as far as accommodating and listening and I'm grateful for that but I don't want to constantly barrage him with this....most other people seem to respond with, really? That sucks. And then change the subject. I feel like I'm being whiny but I've tried talking to people to explain how kind of stressful this is. There are so many things I love to eat but can't. I'm finding really yummy stuff..like I've had the best brownies (gluten-free or otherwise) in my life. I get very sharp upper left abdominal pain....It seems to be going away little by little. It's been three weeks since the oatmeal incident but I worry what the pain was/is from. I've scoured the internet looking for info. Basically I feel overwhelmed and confused and kind of out on my own.

 

So...any suggestions or advice would be welcomed.If I sound like a snot, I'm sorry. I'm totally in a pity party right now and I know I'm lucky I could have way worse problems but at this moment I'm just...bleh.

 

Thanks!!

[mamaw]

hi

 

don't worry  about  feeling  sorry for yourself.... it is  part  of the  grieving  process. We all have been there. The good  news  there  is  health  &  freedom   in  your  future...

You are 37  so  its  is  up to you  if  you  do  the  gluten challenge..... for many  of us  we  feel  so  much  better  without  gluten  we  do not  want to  subject our  sensitive  intestinal tract  with  gluten  ever  again. If  you  are a person  who  needs  documentation  for  an illness then  do  the  gluten  eating  & get  tested. If  you are  okay  with  just  following  te gluten-free  lifestyle  then  go for it.  But  to  get  healthy  you must be  100%  100% of the  time.. you will never  get totally better  if  you  cheat  &  sneak  gluten  ....Going  gluten-free   takes  time to learn  &  yes, there is a learning  curve...be patient , take it  slow & master  it  by  steps. that  way  you  will not  mess up  as  much.

First  off oats  should  be  gluten-free  oats ONLY>>>>>>.And  when  one's  body  is  recovering  it is  best  to  eat  basic,plain (naked)  foods. ie: plain  meats, veggies, fruits all without  marinades,  sauces, rubs, gravies or  seasonings . You  can  season your  own  with gluten-free  seasonings ( McCormick's  clearly  labels)....stay  away from processed & junk  food  ,  let  your  body  heal .....if  you cravwe something  (not anything wheat)  but  per  say  a  cupcake  then  by all means  have  a  bite  or  two  but again no  wheat..... Now  days  one  can find  almost  anything  gluten-free  to match a  wheat  one.. many of us  do mailorder to  find  gluten-free....

 

feel free to  ask  questions to  have...

[maltobella]

hi

 

don't worry  about  feeling  sorry for yourself.... it is  part  of the  grieving  process. We all have been there. The good  news  there  is  health  &  freedom   in  your  future...

You are 37  so  its  is  up to you  if  you  do  the  gluten challenge..... for many  of us  we  feel  so  much  better  without  gluten  we  do not  want to  subject our  sensitive  intestinal tract  with  gluten  ever  again. If  you  are a person  who  needs  documentation  for  an illness then  do  the  gluten  eating  & get  tested. If  you are  okay  with  just  following  te gluten-free  lifestyle  then  go for it.  But  to  get  healthy  you must be  100%  100% of the  time.. you will never  get totally better  if  you  cheat  &  sneak  gluten  ....Going  gluten-free   takes  time to learn  &  yes, there is a learning  curve...be patient , take it  slow & master  it  by  steps. that  way  you  will not  mess up  as  much.

First  off oats  should  be  gluten-free  oats ONLY>>>>>>.And  when  one's  body  is  recovering  it is  best  to  eat  basic,plain (naked)  foods. ie: plain  meats, veggies, fruits all without  marinades,  sauces, rubs, gravies or  seasonings . You  can  season your  own  with gluten-free  seasonings ( McCormick's  clearly  labels)....stay  away from processed & junk  food  ,  let  your  body  heal .....if  you cravwe something  (not anything wheat)  but  per  say  a  cupcake  then  by all means  have  a  bite  or  two  but again no  wheat..... Now  days  one  can find  almost  anything  gluten-free  to match a  wheat  one.. many of us  do mailorder to  find  gluten-free....

 

feel free to  ask  questions to  have...

Thanks so much! I think maybe that's part of the problem. I'm trying to eat processed gluten-free versions of everything. Also I eat out a lot and I think I need to watch that. I can't think of a reason to eat it again and get the diagnosis just to have it other than I get worried something else might be wrong. I really do feel better and my stomach isn't puffed out now. That's good enough for me.

 

Thank you and I'm sure I'll ask more questions. It's funny that I've googled so many related topics and I'm always brought back to this site

[bartfull]

We'll be your support!  I thought I was going to lose my mind a couple of years ago when I first went gluten-free, but the wonderful people here gave me the best advice and let me cry on their shoulders when I needed to. I learned so much and things got so much better.

 

Mamaw gave you some great advice here. Just stick to plain whole foods for a while. Probiotics are a good idea, and maybe some digestive enzymes while you're healing.

 

Cross-contamination can be a real problem too. Read the Newbie 101 thread. It'll teach you how to avoid it. Then come ask as many questions as come to mind. We'll answer your questions, and if you need to rant or cry, we'll be here for you.

[1desperateladysaved]

Sorry, you are going through this.  Your body is doing a lot of work to recovery now.  Take breaks when you can.  It seems like only someone else with gluten intolerance can really understand what one is going through.  It sounds like you have a positive response to the gluten free diet.  That is probably the best indication of gluten problems. 

 

There is so much good food we can eat.  Meat, vegetables, and fruits.  I have learned of several I didn't eat much of before, but really enjoy them now.  Mango is a fruit I discovered.  Oh, yeah, and the sweet potato; I look forward to that every 4 days!  I learned to enjoy cabbage, collard greens, and turnips.  Almond pie crust is so good that even my family likes it!

 

Best wishes for you to have a future energetic life!

 

D

[Lock]

Like you I was sick for years. The doctors seem so clueless. I think you should talk to the GI doctor with an open mind and if he thinks you should do the endoscopy, go for it. If you get a positive diagnosis it will probably lead to you putting all the pieces together and understanding all your health problems. But it does take time. There is so much information to absorb and you have to go find it yourself, it seems like for some reason doctors just have very little awareness of how to handle this. They will give you the diagnosis and say go gluten free, but you will be on your own to figure out your nutrient deficiencies and how to correct them and how to find gluten-free food and so on. But the info is there. This is probably the best general website, you have come to the right place!

 

There is a book called something like "Celiac the first year" written by Jules something my memory is so bad today and I'm in too much a hurry to look it up. She gives a month by month plan to absorb all this. Some things are not applicable to me like she tells you how to handle hosting dinner parties, HA HA HA, I haven't had a "dinner party" in 35 years. But anyway, if nothing else the book helps calm you down and slow you down so you can take things one step at a time.

 

Everything you are feeling is normal. It will take time, the people in your life will slowly come around. They too are totally clueless but as you gain knowledge and confidence they will learn to appreciate your new eating restrictions, hopefully. Best of luck and welcome!

[laura1959]

It will get so much easier, especially when you really start to process that you're feeling so much better and it's all because of the diet!  I related to so much of what you wrote, the random pains, the not waking up feeling refreshed, and have also noticed that these things get better when i eat gluten-free.  Once you really wrap your head around how much being gluten free improves your life, you will never look back.  It does take a little time, as was pointed out, for it to all sink in.  I'm still in the early days too.  

 

There is a lot of great information about avoiding cross contamination here, so I'd encourage you to continue reading this site, asking questions, and reminding yourself that you are entering into a quality of life that you never thought possible, just by changing what you eat.  It's so worth it!