Am I Just Nervous

[florentine]

Here is my story, I have had digestive issues since I was a little girl, I was diagnosed with IBS and lactose intolerance. Not drinking milk did help and I noticed that my symptoms would come and go and I was sensitive to certain food.... but not gluten. I went on a gluten free diet for my daughter, I suspect she has celiac disease and wanted to see how she would do without gluten.  This summer I ate some gluten again here and there and started feeling joint pain, my daughters would eat pizza and birthday parties and have digestive distress for days. Then, I noticed that I didn't digest anything anymore, so I went to a family doctor to get tested thinking I would have a sensitivity and I could finally get the pedatrician to test my daugther.  I was shocked when the doctor called back to say I have celiac disease.  First of all I just had a blood test, but he said it was a strong positive and he as no doubt in his mind that I have it. My kids got tested Saturday , I am waiting for the results. I went a special diet, did great but didn't last a week.  Now, I am back to reacting bad to everything I eat that is spicy or contains grains (gluten-free of course). I woke up at 2 am tonight feeling like someone punched me in the stomach and was sick all night,  do not know if it is the tacos or the spices. I read that the taco shell are made in a facility that also process wheat. Is my digestive system just wrecked?  Is is nerves or I woke up one morning highly sensitive to traces of gluten? Let me say that I ate TONS of gluten all my life and didn't get that kind of reaction. I am seeing the doctor the first week of december and I wished I could see him earlier. Ugh!  I know my post doesn't make any sense, I am just in complete schock.

[nvsmom]

Welcome to the board.  

 

The first few weeks after the diagnosis are the hardest. You need to change your way of eating, we don't feel better yet (recovery can take weeks to months to years), and about a third experience withdrawal so they actually feel worse for a couple of weeks before they get better.  You may need to give 100%gluten-free some more time before you see results.

 

That being said, once gluten is out of the picture, some celiacs find that other sensitivities become much more pronounced - its like your body relaxed a bit and now it can complain about the other foods it doesn't like.  Common sensitivities include milk (50% of celiacs are lactose intolerant when diagnosed although some regain the ability to tolerate milk once they've healed), corn, soy, and eggs; also some react to peanuts, nightshades, and sugar and sweeteners throw others off.  You may need to cut out other foods.  It may be temporary (for 6 months to a couple of years) but it could be permanent.    Keeping a food and symptoms journal could help you see the trends.

 

Give it time.  Remember that going gluten-free is not a quick fix.  Some symptoms may improve right away but some symptoms (like arthritis, anxiety, nerve problems, cognitive issues) can take many months or a few years to improve.  Hang in there.

[bartfull]

What she said.

 

And do go over to the coping section here to read the Newbie 101 thread. It'll help a LOT!

[florentine]

Thanks!  I seem to have a weird feeling at night, I think real dinners feel to heavy for the moment.  I will try to eat lighter for a while, but it kind of stinks to cook separate dinner

[mamaw]

have  you  cleaned  out  your  kitchen  of  utensils  & cooking  utensils  that  maybe  harboring  wheat   crumbs?

Keeping  your  food  very plain & simple without  a lot  of processed stuff will help... gluten hides in  everything....

[florentine]

No! I need to do that tomorrow. Some drawers need some cleaning, my husband still eats regular bread. Fortunately, I have been cooking gluten free for a while and he doesn't mind it. I was just dumb and ate not gluten-free certified oatmeal and carob chocolate with barley in it. I didn't know I had celiac, so I was not über careful. I haven't used the toaster again, but I will get a "clean" one.

[mamaw]

It all takes  patience  & lots  of  time... Sometimes  "accidents"  become  one of the greatest  learning  tools  so  chalk it  up as a learning tool,  make it a positive  , you  probably will not  do it  again  .... Mishaps  may be  creep in at times  while you  are  figuring it all out  .....

Since  there  is  wheat  in your  house make  sure there is no  double dipping ( or  else  get  your own  jars  of  things)ie: butter, jelly, condiments, peanut butter &  so on.... 

Train  the  family to  never  make a  sandwich  on  the  bare  counter always  now use  a paper towel, wipe  up all crumbs asap... I really  should have  took  stock in paper towels!!!!

If  you travel they do  make a bag  called  Toasta Bags that  you  can make  toast, grill cheese, waffles, bagels, & so in  while  using  a "not clean toaster" I carry  them on  vacation  to motels,  & to  family  while visiting....A lfesaver for me.. I  also cart along an ice  chest full of gluten-free  food & goodies....sometimes I even take a single hot  (electric) plate  to  heat  or  cook  gluten-free food  on  in the  motel room...

 

I'm a  BIG fan of  Probiotics  & digestive  enzymes..we  need all the  digestive help we  can get.....

 

My  hubby  eats gluten-free  at  home  & loves  it  but  if we  are  out at a restaurant  he  eats  regular  food.. He  does  have  a  couple  of  snacks  that  are not gluten-free, other than that  we  are  gluten-free.....at home....

[florentine]

I will like for the toasta bags, especially if the kids have it too. I bought some probiotics at Whole Food, I still wonder what made me so sick sunday night. I went back to the gym today and I was so weak.

Kind of off topis, but my parents are being annoying. The say I may not have it since they didn't test my intestine and that nobody can digest wheat because of the GMO. In conclusion, it's not celiac but the bad GMO wheat.

[mamaw]

I agree  with  parents to a certain  extent... GMO"S  are  BAD.....The US is  far  behind  the rest  of the world  when it comes  to  stopping GMO products in this  country...that  is as  far  as I agree  with  the parents....

And  if  you have  been  eating gluten free , you  can not  get  an accurate  test result....while eating gluten-free......

And  for both  celiac  & ncgs the outcome  is the  same ---- a strict  gluten-free  lifestyle 24/7,,,,, 365 days a  year,,,, 100 %  of the  time....

if  your  parents  believe  no one can digest  wheat   are  they  not  consuming  any wheat  foods themselves?

[florentine]

I avoid GMO's too, but yeah, she still eats wheat. The worse is that she has IBS , can't drive at night and has thyroid issues like me). She should get tested instead of discussing GMO.

[mamaw]

yes, you are correct.but  you know  some  people  family or not  love to cause  more  pain in the a**  than  help  &  understand  the issues....sorry, I've  got  a  couple  in my family too...

[florentine]

She is mainly eaten by guilt that she didn't found out when I was a kid. It's not her fault really, she did bring me to the doctor I was even hospitalized for am entire week for what they thought was a virus.

[SMRI]

No! I need to do that tomorrow. Some drawers need some cleaning, my husband still eats regular bread. Fortunately, I have been cooking gluten free for a while and he doesn't mind it. I was just dumb and ate not gluten-free certified oatmeal and carob chocolate with barley in it. I didn't know I had celiac, so I was not über careful. I haven't used the toaster again, but I will get a "clean" one.

 

I was told no oatmeal, even certified gluten-free, for a year.  The oats are too similar to wheat and are irritating to your intestines as you heal.

[florentine]

Good to know! I was wondering why I always digested oatmeal, so hum ...fast. Anyway, I like the cheap kind of oatmeal, the kind I will never be able to eat again. I also have to give the Qiá superfood cereal too, they made me feel bad even if they are gluten free. I was able to eat crackers though, so I guess I am feeling better.

[w8in4dave]

I had to stay away from all grains at first. Then I started buying gluten-free rice, It's ok as long as I don't eat too much. I have not eaten any gluten-free oats. Kinda afraid to. I think after figuring out my corn intolerance I am just afraid to eat too many grains. So I have limited it to Rice once in a while. I try not to eat pre packaged foods. Sometimes its gunna happen. I bought some gluten-free really good crackers the other day. Felt good to eat something with a crunch. I liked them so much I made some similar to them. Good luck hope you feel better! 

[florentine]

I bought those certified gluten-free pop chips, I did ok with them, but they are too good, they are off the list for weight issues, lol. I have been feeling great since Thursday. I am going to visit family, I will eat my own food minus the Thanksgiving meal, finger's crossed.