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
stephanie19
Posted

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
NoGluGirl
Posted
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
mftnchn
Posted

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
Kellygirl
Posted

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
NoGluGirl
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.