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

Gluten Free But Still Having Problems


leo.the.bunny

Recommended Posts

leo.the.bunny Rookie

Hi

Sorry to write such a long post, but I want to make my experience as detailed as possible so that it's easier to answer!

I just wanted to ask a few questions about allergies and leaky gut. About 5 months ago I was having a lot of digestive problems, fatigue, depression a lot of weight loss (which is not a good thing for me because I was already quite skinny) and was eventually given a blood test for celiac which came back negative. I went on the gluten free diet anyway and most of my symptoms went away within about a week except for my stomach bloating and gas which lasted 2 weeks. During this time I had been eating lots of gluten free processed food, lactose free milk and going out for dinners and it was all perfectly fine so I was happy and started eating a lot and managed to gain back quite a bit of weight until I got glutened again while eating out. After this I stopped eating out as much and felt much worse than I did the first time I went off gluten, but after 2 weeks I was again completely better. Another week later I was back on my weight gaining regime and ended up getting glutened by putting my bread in the toaster that my parents use which I thought wouldn't happen since I do not have celiac disease, but regardless I have since completely avoided any form of cross contamination that I can think of.

The problem is I haven't really healed this time and it's been over a month. Sometimes when I have eaten something that contained absolutely no gluten in it my stomach would just swell up 10x it's normal size (while it was already quite swollen) and I would get really bad stomach pains and other problems... I sort of figured out that it may have been corn since cornflour was often used in my meals when this would happen, but sometimes when I ate cornflour it didn't do this at all. After about a week of no corn (and pretty much no processed food at all) I didn't experience any pain but my stomach was still very distended. I decided to cut out dairy. I had been eating lactose free but not dairy free and thought maybe this was the solution to my problems. It's been almost a week and my stomach has not gone any flatter, but my fatigue, depression and insomnia has come back which I am thinking might be because of withdrawal from dairy? I am really hoping it isn't something else. A lot of my gas has gone away since cutting out dairy, but I still feel like there's something lingering in the background and the fact that I have barely any symptoms besides constant bloating makes it harder for me to determine what it could be. I have been eating a lot of rice, eggs, nuts and night shades (mostly potatoes and tomatoes) and am wondering if this could be the problem, but I'm so scared to cut anything else out because every day that I don't stuff my face with food I seem to lose almost a kilo (2 lbs?).

I know a lot of people experience leaky gut and other allergies popping up, but I'm just wondering if it sounds like I could have one of these problems or are my symptoms too mild and I should just wait to see if it goes away before cutting anything else out of my diet? I know I haven't been dealing with this as long as a lot of people, but I'm just worried if I do nothing about it it'll get worse and if I do start cutting out food I may end up losing all the weight I gained back for nothing >< I am quite depressed at this point and could really use some advice...


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



Celiac.com Sponsor (A8-M):



tom Contributor

...I know a lot of people experience leaky gut and other allergies popping up, but I'm just wondering if it sounds like I could have one of these problems or are my symptoms too mild and I should just wait to see if it goes away before cutting anything else out of my diet?

...

I don't think your symptoms are too mild for leaky gut problems.

They don't have to be extreme.

Having to figure all this out can be pretty aggravating. I remember wishing I didn't have to eat at all.

A food/symptom diary can help pinpoint what's safest, what's most iffy, etc.

A simpler diet is easier to track correlations of course. It only helps a little when it's "one of these 14 ingred is a likely culprit".

Do you happen to have your blood test results? The Full Celiac Panel is 5 or 6 tests, but we often see ppl here whose Drs ran fewer.

Not sure what else to say. Hope you can figure it out asap tho, leo.

Reading others' posts in the Other Intolerances section may give you more ideas.

porkchop60c Apprentice

Hi

Sorry to write such a long post, but I want to make my experience as detailed as possible so that it's easier to answer!

I just wanted to ask a few questions about allergies and leaky gut. About 5 months ago I was having a lot of digestive problems, fatigue, depression a lot of weight loss (which is not a good thing for me because I was already quite skinny) and was eventually given a blood test for celiac which came back negative. I went on the gluten free diet anyway and most of my symptoms went away within about a week except for my stomach bloating and gas which lasted 2 weeks. During this time I had been eating lots of gluten free processed food, lactose free milk and going out for dinners and it was all perfectly fine so I was happy and started eating a lot and managed to gain back quite a bit of weight until I got glutened again while eating out. After this I stopped eating out as much and felt much worse than I did the first time I went off gluten, but after 2 weeks I was again completely better. Another week later I was back on my weight gaining regime and ended up getting glutened by putting my bread in the toaster that my parents use which I thought wouldn't happen since I do not have celiac disease, but regardless I have since completely avoided any form of cross contamination that I can think of.

The problem is I haven't really healed this time and it's been over a month. Sometimes when I have eaten something that contained absolutely no gluten in it my stomach would just swell up 10x it's normal size (while it was already quite swollen) and I would get really bad stomach pains and other problems... I sort of figured out that it may have been corn since cornflour was often used in my meals when this would happen, but sometimes when I ate cornflour it didn't do this at all. After about a week of no corn (and pretty much no processed food at all) I didn't experience any pain but my stomach was still very distended. I decided to cut out dairy. I had been eating lactose free but not dairy free and thought maybe this was the solution to my problems. It's been almost a week and my stomach has not gone any flatter, but my fatigue, depression and insomnia has come back which I am thinking might be because of withdrawal from dairy? I am really hoping it isn't something else. A lot of my gas has gone away since cutting out dairy, but I still feel like there's something lingering in the background and the fact that I have barely any symptoms besides constant bloating makes it harder for me to determine what it could be. I have been eating a lot of rice, eggs, nuts and night shades (mostly potatoes and tomatoes) and am wondering if this could be the problem, but I'm so scared to cut anything else out because every day that I don't stuff my face with food I seem to lose almost a kilo (2 lbs?).

I know a lot of people experience leaky gut and other allergies popping up, but I'm just wondering if it sounds like I could have one of these problems or are my symptoms too mild and I should just wait to see if it goes away before cutting anything else out of my diet? I know I haven't been dealing with this as long as a lot of people, but I'm just worried if I do nothing about it it'll get worse and if I do start cutting out food I may end up losing all the weight I gained back for nothing >< I am quite depressed at this point and could really use some advice...

Hi,

I have been gluten free for 2 years and dealt with food sensitivities. You should try one of those foods that you suspect and take it out for a week or more and see how you feel. If no different , then try another one. The you won't feel deprived. If it does not work, then you could have more than one food problem. I know it is expensive but i did the IGG blood test and I am feeling good. I cannot have honey, nutmeg, raspberries, turmeric, and arifical flavors. i never would have figured this out on my own. The Elisa food testing is a good one. I did it through a chiropractor. She had worked with Dr. Mark Hyman years ago. You can get really good info form the ultra wellnesscenter .com about mark Hyman. He knows the gut and is a great doctor. My daughter is dealing with many allergies now and if she does not get well, I am going to his clinic in Mass. It is expensive ,but her health and well being is more important. Rotate your foods so at least you are giving your body a break from the ones that are bothering you. Also, Carlsons cod liver oil , fit D drops by encapsulation are pure, and if you were to see a natureopathic they would have you taking enzymes to break down the proteins so you can digest better. L-glutamine powder is for healing the gut too. I was told but nutritionist to eat your heavier meals for breakfast and lunch and eat smaller at supper. If hungry bone broth is very healing. you need to give your gut a rest so it can heal and so your detoxify. My daughter and I are getting good at not eating at night. If we do, fruit or something small. hope this helped.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,033
    • Most Online (within 30 mins)
      7,748

    davidvibezb
    Newest Member
    davidvibezb
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.