Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Gluten Free For 4 Months, And Feeling Horrible Again...


gatheringroses

Recommended Posts

gatheringroses Rookie

Hi everyone,

I am feeling horrible still.

I was diagnosed as either having celiac or a severe gluten intolerance in May by elimination. I get sick from even a crumb.. Like all of you, I felt like a brand new person once I figured out what was going on.

Anyways, I've been really careful. I've avoided going out for dinner for the past month (mystery sicknesses were emerging), and I've started buying only organic food.

Now, I've been getting really sick lately. No gluten. And, I am cutting out soy (I am a vegetarian, this breaks my heart!), all nuts, and dairy (but, I've heard that goat's cheese is generally OK - is that true for most of you?).

Yesterday, I slept all day. Today, I slept in, finally got myself out of the house to school, and now I am incredibly tired. I want to go home and sleep.

Did anybody have a period of recovery followed by feeling really sick? (without eating Gluten)?

Did anybody develop allergies not directly after - but a few months after - cutting out gluten?

Are there any other vegetarian foods that some of you have had reactions to?

Any help/direction you could give me would be great. I don't really trust doctors anymore (it took them 22 years to even guess that was what was going on !!!), and I don't have any idea about what is going on..

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Cutting out the dairy and soy is a good idea. What are you using as a dairy replacement? If you are going with Rice Milk make sure it is not Rice Dream as that is not safe for us despite it being labeled gluten free. Are you taking any supplements, script or OTC drugs? Labeling laws are different for those than they are for foods. If you supplement has wheat or barley grass it can still be labeled gluten free but most of us will react to that. Look at anything you may have changed before you started feeling worse, toiletries, new significant other who eats gluten (they need to brush teeth before kissing) new crafts or home repair work that uses gluten ingredients a pet who eats gluten containing food are some examples of stuff that can get us.

Link to comment
Share on other sites
gatheringroses Rookie

Cutting out the dairy and soy is a good idea. What are you using as a dairy replacement? If you are going with Rice Milk make sure it is not Rice Dream as that is not safe for us despite it being labeled gluten free. Are you taking any supplements, script or OTC drugs? Labeling laws are different for those than they are for foods. If you supplement has wheat or barley grass it can still be labeled gluten free but most of us will react to that. Look at anything you may have changed before you started feeling worse, toiletries, new significant other who eats gluten (they need to brush teeth before kissing) new crafts or home repair work that uses gluten ingredients a pet who eats gluten containing food are some examples of stuff that can get us.

Thanks for your reply, and the Rice Milk tip!

As far as I can tell, there have been no changes in my diet/lifestyle since I started feeling worse...

I was actually vegan before I realized the celiac thing, and I've never really been one for milk. But, thanks for the Rice Dream tip!! I'll stay away from it.

I am going to get my partner to brush her teeth after gluten... and, no new toiletries, no new home repairs, and my pets are eating low-grain food (lower grain than they were eating before, but I'll switch it up to grain-free).

I am taking Lamictal and Xanax (for the horrible side-effects that the allergy caused for my mood), but I am in the process of getting off of them since they are no longer needed... thankfully, I've got a bit of an addiction going on now after years of unneeded use...

Does anyone have any experience with Xanax or Lamictal? Or, suddenly feeling sick without any notable changes?

Thanks so much for pointing out some of the things that could be causing a reaction... I am going to go through all of my current products tonight to see if I need to do away with any of them.

Any more tips would be appreciated...surly, my doctor will not be of any help to me.

Link to comment
Share on other sites
gatheringroses Rookie

! I think I figured it out! I just got a new prescription of Xanax. Maybe the generic form is not gluten-free!

Link to comment
Share on other sites
ravenwoodglass Mentor

! I think I figured it out! I just got a new prescription of Xanax. Maybe the generic form is not gluten-free!

Name brand Xanax is not gluten free. The generic, Alprazolam, made by Sandoz is unless they changed it recently. I have been taking it safely for quite some time. If your's is made by a different company put the company name and the words contact info into a search engine and you should get a telephone number to call the company directly and ask. I usually tell them I am allergic to wheat as wheat starch may be considered gluten free. I am not familiar with the other drug but you may want to call the company about just to be safe.

Since we can become more sensitive after we have been gluten free for a bit it may turn out to just be the kisses, pet food etc that you are reacting to.

Link to comment
Share on other sites
gatheringroses Rookie

Name brand Xanax is not gluten free. The generic, Alprazolam, made by Sandoz is unless they changed it recently. I have been taking it safely for quite some time. If your's is made by a different company put the company name and the words contact info into a search engine and you should get a telephone number to call the company directly and ask. I usually tell them I am allergic to wheat as wheat starch may be considered gluten free.

I just called the pharmacy... Apparently, the brand they gave me is generally gluten free, but sometimes it might not be (?). Celiac disease is listed on my file, so it's pretty annoying that they didnt check. Oh well. At any rate, they were both helpful and apologetic, and offered to give me two pills for tonight from a company that is gluten free for sure. And, tomorrow, they'll contact my doctor, and ask for new medication for me. Phew.

Hopefully, that's the only issue.

I am trying to get my partner to use her own toaster, but she thinks there isn't enough space on the counter..... to which, I replied, "We will get rid of the blender!"

Link to comment
Share on other sites
Roda Rising Star

I am trying to get my partner to use her own toaster, but she thinks there isn't enough space on the counter..... to which, I replied, "We will get rid of the blender!"

I really hope you are not sharing a toaster. This will gluten you. You will need two separate toasters and your's has to be one that has never had gluten in it. Hope you feel better soon.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Braver101 posted a topic in Coping with Celiac Disease
      0

      Constant sweating with celiac disease

    2. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      10

      Peripheral Neuropathy

    3. - trents replied to djmu's topic in Related Issues & Disorders
      10

      Peripheral Neuropathy

    4. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      10

      Peripheral Neuropathy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,485
    • Most Online (within 30 mins)
      7,748

    Julie Riordan
    Newest Member
    Julie Riordan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Braver101
      Does anyone else get soaking wet sweats just out of nowhere? I’m not in menopause, there’s nothing wrong with me except celiac disease and my thyroid, and I’m taking my medicine. I am 18 days gluten-free but I cannot stop sweating and it makes me freezing cold and I’m soaking wet and changing my clothes literally as I’m changing my clothes the new clothes are soaking wet and nobody will help me. Please somebody out there help me. 
    • Tlbaked13
      Sometimes I end up spitting out a drink of water! But for the most part I do ok with the liquids that I've been sticking to which Is hardly anything carbonated (meaning diet soda mainly)  I drink alot of tea which I make myself lipton cold brew sweetened with half sugar and half Splenda, smoothies when I could in the beginning but made with milk so I'm now using orange juice instead of the milk but it doesn't workout real often I drink black coffee in the mornings with no trouble usually and I've been experimenting with some juices but the sugar content is a set back I'm not a huge water fan but will drink it unfortunately where I live I can't do the tap water I'm the only one who has a problem with it apparently but for some reason I just can't...unless I'm using it in coffee or tea and the tea even took me some time to stand yes I have thought about boost/ ensure but they are very costly for someone who is scrapping the bottom at this time 
    • trents
      Do you believe your swallowing is a manifestation of your neuropathy? I'm thinking if you are having trouble getting food down you need to focus on consuming things that have a high nutritional density so that whatever you are able to get down counts for something. Have you looked at Boost and other high protein/high calorie shake products?  They are fortified with vitamins and minerals as well. Do you have any trouble with aspiration of liquids? For celiac testing purposes, the guidelines are calling for daily consumption of about 10gm of gluten - the amount in about 4-6 slices of bread - in order to ensure valid testing. That sounds like it would be a challenger for you.
    • Tlbaked13
      Thank you and I am aware that I should be eating a "normal" diet until tested it's kind of been trial and error for my diet or more like just ERROR! I about 1-3 bites a meal I'm to a point that 99 percent of the time I'm having trouble swallowing just about everything occasionally I find either something or a very small window of time that allows me to get very little of something! I am basically getting zero nutrition what so ever because I take one bite of the meal that I usually just slaved over just to end up tossing it when it's all said and done...did anyone else ever experience anything like this?  I am more then open to suggestions! It is taking a very extreme toll on me and my body forsure 
    • JustGemi
×
×
  • Create New...