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

New To gluten-free With Questions


stephanie19

Recommended Posts

stephanie19 Newbie

Hi everyone,

I'm new to the forum, and this is my first post. As background, I have tried gluten-free off and on for the past year or year and a half but haven't consistently been able to stick to it. I didn't really have any symptoms to begin with--I had just heard that a lot of people feel better when they're off gluten, and since I was in the process of improving my diet anyway, I thought I would give it a try. (Plus, I had some sort of "allergy" to wheat when I was a baby--but apparently not to rye--which I supposedly "outgrew," even though I've heard that's not possible, even if the symptoms go away. I don't know what the deal was with wheat being a problem but not rye.) I'm a college student, and when I was at school and totally responsible for my own food, I had no problem sticking with gluten-free. But when I came home for weekends/vacations every month or so, I would be surrounded by yummy gluten foods and just couldn't resist. As soon as I returned to my apartment, I immediately switched back to gluten-free and felt great.

This off-and-on experience raised several questions that you all might know the answers to from your experience:

First, I have a harder and harder time keeping myself from eating it. It's like I'm addicted! Is this a normal reaction to have if you're gluten sensitive?

Second, it seems like each time I go off of gluten-free, I notice more problems. Within the last few weeks, I've started experiencing join pain in my hands/wrists and feet/ankles and jaw, more bloating, headaches, this weird garlicky/yeasty body odor, red bumps on my skin, having a harder time concentrating, and just feeling less energetic. Is it normal to get progressively worse like this? It's weird that I had no problems before I started this whole experiment--did I create a problem I didn't have when I started?

That raises a general question that I've thought of from my own experience and from reading posts about people who develop new food sensitivies, like soy, after they go gluten-free. Am I correct with this observation? It seems like cutting out gluten creates new problems, either making symptoms from gluten sensitivity worse, or bringing about new sensitivities.

The fact that I've developed new symptoms has helped me make up my mind that starting tomorrow, I'm going to commit to cutting out gluten for the long-term. The hand pain especially is distressing, since I'm a trombone player, and the worsening pain is preventing me from being able to play. I don't know if it's caused by gluten, since I've never been diagnosed, but I figure it's worth a try. (By the way, do you think it's worth being tested by Enterolab even though it's so expensive?) How long do you think I need to be gluten-free faithfully in order to see a difference, if it's going to make a difference?

Since I've tried gluten-free before, it's not totally new to me, although I'm sure there are some things I'll discover that I've been doing wrong. It's the long-term commitment that's scary to me--like I said, I feel like such a gluten junkie, I don't know how I'm going to do it! I'm also vegan, so it can be hard coming up with ideas of things to eat (especially if I end up with new sensitivities, like corn, yeast, soy, etc., as some seem to do...).

Thanks,

Stephanie


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



Celiac.com Sponsor (A8-M):



NoGluGirl Contributor
Hi everyone,

I'm new to the forum, and this is my first post. As background, I have tried gluten-free off and on for the past year or year and a half but haven't consistently been able to stick to it. I didn't really have any symptoms to begin with--I had just heard that a lot of people feel better when they're off gluten, and since I was in the process of improving my diet anyway, I thought I would give it a try. (Plus, I had some sort of "allergy" to wheat when I was a baby--but apparently not to rye--which I supposedly "outgrew," even though I've heard that's not possible, even if the symptoms go away. I don't know what the deal was with wheat being a problem but not rye.) I'm a college student, and when I was at school and totally responsible for my own food, I had no problem sticking with gluten-free. But when I came home for weekends/vacations every month or so, I would be surrounded by yummy gluten foods and just couldn't resist. As soon as I returned to my apartment, I immediately switched back to gluten-free and felt great.

This off-and-on experience raised several questions that you all might know the answers to from your experience:

First, I have a harder and harder time keeping myself from eating it. It's like I'm addicted! Is this a normal reaction to have if you're gluten sensitive?

Second, it seems like each time I go off of gluten-free, I notice more problems. Within the last few weeks, I've started experiencing join pain in my hands/wrists and feet/ankles and jaw, more bloating, headaches, this weird garlicky/yeasty body odor, red bumps on my skin, having a harder time concentrating, and just feeling less energetic. Is it normal to get progressively worse like this? It's weird that I had no problems before I started this whole experiment--did I create a problem I didn't have when I started?

That raises a general question that I've thought of from my own experience and from reading posts about people who develop new food sensitivies, like soy, after they go gluten-free. Am I correct with this observation? It seems like cutting out gluten creates new problems, either making symptoms from gluten sensitivity worse, or bringing about new sensitivities.

The fact that I've developed new symptoms has helped me make up my mind that starting tomorrow, I'm going to commit to cutting out gluten for the long-term. The hand pain especially is distressing, since I'm a trombone player, and the worsening pain is preventing me from being able to play. I don't know if it's caused by gluten, since I've never been diagnosed, but I figure it's worth a try. (By the way, do you think it's worth being tested by Enterolab even though it's so expensive?) How long do you think I need to be gluten-free faithfully in order to see a difference, if it's going to make a difference?

Since I've tried gluten-free before, it's not totally new to me, although I'm sure there are some things I'll discover that I've been doing wrong. It's the long-term commitment that's scary to me--like I said, I feel like such a gluten junkie, I don't know how I'm going to do it! I'm also vegan, so it can be hard coming up with ideas of things to eat (especially if I end up with new sensitivities, like corn, yeast, soy, etc., as some seem to do...).

Thanks,

Stephanie

Dear Stephanie,

Yes, you are addicted to gluten! It is common to be addicted to what you are allergic to! Isn't it scary? It is true many people with multiple food intolerances do not discover the others until they have been gluten free for a while. I may have others, as a matter of fact. Symptoms can progress with time. They do tend to worsen. You may not have muscle and joint pain in the beginning, only gastric distress. This varies from person to person. Of course, there is a possibility that you had the symptoms before but were just used to them. So, you did not notice them as much until you went back to eating gluten after being on the gluten-free diet for a while.

The yeasty/garlicky body odor is likely due to a yeast infestation. I have body odor like that. I have been on a lot of antibiotics throughout my life, along with steroids for asthma, and birth control for ovarian cysts. That is a trifecta of doom for bringing about an overgrowth of Candida. I have an essay I would be more than happy to e-mail you. Just PM me with your e-mail, and I will send it in an attachment.

Being vegan can make this more difficult to follow. However, some good news is that I was longing for Chinese food ingredients. When I did my search, I found out Mori-Nu has a number of gluten-free products. :) All Mori-Nu Silken Tofu (8 varieties)

Mori-Nu Mates Chocolate Pudding Mix (Chocolate, Lemon Creme, and Vanilla)

I hope this helps!

Sincerely,

NoGluGirl

mftnchn Explorer

Hi Stephanie,

Yes it is really difficult to adjust to and stick to this diet! For me, convinced that I may be celiac and reading about what damage it does to my body scared me into a commitment to a long-term attempt--at least to see what happens with my health.

I am 3+ weeks into gluten-free. There are lots of treats that are really good and I don't feel too deprived as yet. But you have to make them or find them and that takes time and effort. The gluten-free peanut butter cookies are great and easy to make!

What I have gleaned from this forum is that yes, things can get worse before they get better. That is the case for me too. I only have one symptom (the one I started trying to find an answer for) that has improved a bit but it is not consistent. Other symptoms have come on or worsened. I read an older post earlier today that explained that if you want to feel better faster, being more strict is what will help. Apparently everyone has to go through the period where they are more sensitive to things, eventually when you heal, you become less sensitive. But it takes time. And some people feel good right away, but many don't feel better for months.

I think if you are strict and these new symptoms go away, that's a good sign that you should stick with it.

Good luck!

Kellygirl Rookie

I agree you will get worse before you get better. My bloated marshmellow body also agrees with this statement. It is almost like my body is rebelling against the diet, my body is mad and it is acting out. I will stick with it and endure the bloating abdominal area and the pimple and the numb hands when I go to bed because despite all of that, I am off my stomache pills and I am off the pills for IBS, panic attacks are gone and I am not waking up in the middle of the night with the grating pain inbetween my ribs.

I think my hormones are in distress because I was usually so routine, and I haven't got myself in a routine with the gluten free food yet. I think it is possible for you to sense more issues when your body has been on again off again with gluten mainly because it is quite possible you had these problems mildly before and just didn't notice them. Now that you are routine until your gluten binges, your body is more sensitive and in touch with what it normal eats, so it's acting out.

I am not doctor, but that is my amature opinion.

Kelly

NoGluGirl Contributor

Dear Stephanie,

I went gluten-free 8 months ago. I had such severe reflux that I was taking two Prilosecs daily and still having to sleep sitting practically straight up. Now, I actually have times where not only can I skip my second pill, but can lie flat to sleep! It is like a miracle. That is on top of the stomach bloating and cramping in the colon. I had these poking pains in my stomach all over. The nausea was unbearable to the point I was at that pre-gag stage most of the time. I could not go to the dentist or the doctor hardly due to its severity. Within three days of going gluten-free, I began to notice the change. I did not have withdrawal. I have not been tempted to cheat. I miss flavorful pizza and chinese takeout. However, I found out ingredients I could make at home. Homemade Chinese is the most authentic anyway. I also was surprised to learn some of the things on the market we could have.

Who knew Dinty Moore Beef Stew or Turkey Spam was safe? I would never make it as a vegetarian. I get sick if I do not have meat.

Sincerely,

NoGluGirl

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748

    Elkay008
    Newest Member
    Elkay008
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.