Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Really Struggling With The Celiac Thing


amandasch

Recommended Posts

amandasch Newbie

I got diagnosed with celiacs spru in the last part of 07 I was 24 at the time and I was in recovery from drugs. I got married to an awsome husband last year also. So this has been hard for both of us. He has been my support and when he is home he eats the diet too. We have done everything by the book. I had just finished my cosmetology degree and found out that the hair spray in the salon was making me sick cuz 90% of them contain wheat. Well i took time off and that didn't help i just slept all the time and it was easier to not eat than eat. I am back at work. In a salon that lets me use my own stuff and they are way supportive. But I can't gain weight and i am depressed. And i feel like i am running on anxiety all the time, I just cant seem to feel better. I have fallen off the wagon a few times and its so hard to deal with this. I was on a drug call subboxenne for opiate addiction and then they switched me to subutex. Does anyone know why i cant gain weight, i am depressed and i am full of anxiety since i follow the gluten free diet. Did anyone go through not being able to eat, or not even noticing you didn't eat after you got diagnosed. How come i am super skinny and most people i talk to with this are healthy. Whats wrong?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mismalw/cealiac Newbie

I'm sorry you feel like that. i go to a middle school when it takes two bucks to by a pizza and no one stops you. I've been struggling with that for a while. i've been cheating and i know its making me sick but something inside me is saying, "hey this one time its not going to hurt me" of "i was mis diagnosed" it sucks cause i know i'm hurting myself but i can't stop.

Ursa Major Collaborator

Amanda, are you still eating/drinking dairy? It is best to eliminate dairy for at least the first few months on a gluten-free diet, to allow your intestines to heal. Dairy can stop the healing from happening. As can soy.

The tips of your villi are supposed to produce the enzyme lactase, which is necessary to digest dairy. If those tips are gone or damaged, you can't digest dairy.

Also, have you made sure to replace your toaster and plastic colander? Did you buy new wooden cooking spoons? Are you still using an old wooden cutting board? Those could all keep you sick.

amandasch Newbie

Well i didn't eat dairy for the first few months and i can tollerate a lil bit of dairy. I eat a lot of soy based foods i didn't know that.

I know this is gross but i Am still bloated and that icky stuff still comes out in my bowels. I am extremely skinny. To the point i dont even recoqnize myself in the mirror anymore.

Yeah we got new stuff for our wedding and we had to get rid of all of it and start over. The cabnits are the same. And i live in a apt and i am sure thats it.

Amanda, are you still eating/drinking dairy? It is best to eliminate dairy for at least the first few months on a gluten-free diet, to allow your intestines to heal. Dairy can stop the healing from happening. As can soy.

The tips of your villi are supposed to produce the enzyme lactase, which is necessary to digest dairy. If those tips are gone or damaged, you can't digest dairy.

Also, have you made sure to replace your toaster and plastic colander? Did you buy new wooden cooking spoons? Are you still using an old wooden cutting board? Those could all keep you sick.

amandasch Newbie

I am sorry if i would have found out when i was in middle school iwouldn't have got into drugs. I know thats why i wasn't right in my head growing up.

I'm sorry you feel like that. i go to a middle school when it takes two bucks to by a pizza and no one stops you. I've been struggling with that for a while. i've been cheating and i know its making me sick but something inside me is saying, "hey this one time its not going to hurt me" of "i was mis diagnosed" it sucks cause i know i'm hurting myself but i can't stop.
ksymonds84 Enthusiast
Well i didn't eat dairy for the first few months and i can tollerate a lil bit of dairy. I eat a lot of soy based foods i didn't know that.

I know this is gross but i Am still bloated and that icky stuff still comes out in my bowels. I am extremely skinny. To the point i dont even recoqnize myself in the mirror anymore.

Yeah we got new stuff for our wedding and we had to get rid of all of it and start over. The cabnits are the same. And i live in a apt and i am sure thats it.

Amanda,

Just wanted to say welcome to the board and congratulations for your drug addiction recovery. My daughter who is almost 20 is also recovering so I know how hard that is. Your body has been through alot with the drugs plus dealing with celiac. It may take your body a little more time to heal. Keep a daily food journal so you can keep track of everything that goes into your mouth, I also add a little note about how I am feeling as well. This helped me figure out alot of things with hidden gluten when I went back over it when suspecting a certain food. Ursula is right about alot of people reacting to soy so since you say you eat alot of it that could be your culprit.

aikiducky Apprentice

Are you taking any vitamin supplements, have your vitamin levels been tested?

I keep recommending two things here, what has helped me a lot with feeling less depressed is taking a vitamin B complex, and fish oil capsules that have omega 3 fatty acids. Especially the omega 3's are important for your brain function. It takes a couple weeks before you start to notice their effect, just good to know.

Try to eat as much fresh food as you can, you know vegetables, fruit, meat, fish, not too much processed gluten free cookies and breads etc.

Try to get some exercise every day, a twenty minute walk is already enough, that gives your skin some sunshine, and your body some exercise. Even if you feel really blah, it's better to move than not.

Come and rant here any time you feel like it, we all understand! ;)

Hope this helps a little...

Pauliina


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



home-based-mom Contributor
I was on a drug call subboxenne for opiate addiction and then they switched me to subutex.

Have you called the manufacturer of either of these to verify they are gluten free? From reading other threads I have come to realize that even though it can be difficult to get the information because the person answering the phone may not know the answer and may not even know who to ask, it is definitely worth pursuing until you get a definite answer. Generics are more likely to have gluten containing fillers, but you need to ask about everything. Prescriptions can be written to specify brand name only if necessary, and a gluten free one can be specially formulated just for you.

Hope you feel better soon. :)

nikki-uk Enthusiast

Just wanted to add it sounds like you may have been an undiagnosed coeliac for many years.

It probably took many years for you to get this ill. Stick with it!! ...for some it just takes a little longer <_<

My hubby was terribly skinny by the time he was dx - he didn't hardly put any weight on for the first year - barely had the energy to eat, was still really weak and felt frustrated like you!............four years later he is 50 pounds heavier!!!!

Good Luck :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,079
    • Most Online (within 30 mins)
      7,748

    Terra33
    Newest Member
    Terra33
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.