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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    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

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.