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:
    Support Our Content
    eNewsletter
    Donate

Gluten Free But Still Having Problems

leo.the.bunny

Recommended Posts

leo.the.bunny Rookie
leo.the.bunny
Posted

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
tom
Posted

...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
porkchop60c
Posted

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.

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


  • Member Statistics

    • Total Members
      127,685
    • Most Online (within 30 mins)
      7,748
    Janahawk
    Newest Member
    Janahawk
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By trents · Posted

      Thanks for the additional information. I was thinking of asking you if your daughter was taking methylated vitamins since she has the MTHFR gene but you beat me to it. To answer the question you posed in your original post, as I explained, celiac disease does not damage the colon but the lining of the small bowel. If the damage is pronounced enough and the doc doing it is experienced, yes, the damage done to the lining of the small bowel can be spotted with the naked eye.
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      I could not locate the correct Gary Brecka video where he explains the methylation process and specifically states things about how people with the MTRR homozygous gene mutation are known to suffer from heartburn due to a weakened valve/sphincter where the esophagus and the stomach connect.  My brother had the youtube video sent to him from 10x health which is probably why I cannot locate it.     I will have read up on mast cell activation.  I do not know anything about it.  Tums is my preferred gerd treatment.  I always figured a little extra calcium could not hurt me.  
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Trents: Due to a genetic mutation, my daughter has inherited from both parents she cannot process the Folic Acid provided in the fortified American grains.   An MD told her to avoid eating fortified grains.   My daughter makes the assumption that unless she makes the food item, that the baker used a fortified grain so she has been limiting her gluten intake since 2020.   Her Psychiatrist was who tested her for MTHFR gene issue because she suffers from depression and severe anxiety. The Psychatrist also instructed my daughter to supplement with a methylated version of folate once she knew my daughter was homozygous, because the methylated version bypasses the mutated gene step so her body can absorb it.  Low folate absorption impacts serotonin and dopamine production.  My husband and I also both have two other homozygous gene mutations that interfere with vitamin absorption: MTRR and VDR taq.  The first interferes with B-12 absorption which requires us to take a methylated B-12 vitamin and the second with Vitamin D absorption so we have to take higher doses to stay within normal levels.   My brother, who has the exact same gene mutations, went through 10x health genetic testing for vitamin supplements (paid by his employer) and received a huge report saying the same things about which types of supplements had to be taken.  Gary Brecka does videos on how these gene mutations impact the vitamin absorption pathways.       If my brother had not gotten his testing through work, he would never would have started his supplement journey.  His testing is what triggered my getting functional health testing that tested similar biomarkers to his.  Again the celiac testing was an add-on test that I did off the cuff.  
    • trents
      Colonoscopy with large are of inflammation

      By trents · Posted

      Welcome to the forum, @growlinhard1! If eliminating gluten from your diet makes significant improvement in your symptoms then there are two possibilities. Either you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is that celiac disease is an autoimmune disorder that creates inflammation and, over time, damages the lining of the small bowel which inhibits nutrient absorption whereas NCGS does not damage the lining of the small bowel. They share many of the same symptoms. At the end of the day, the antidote for both is to abstain from foods that contain wheat, barley or rye, the three gluten-containing grains. Some countries supply stipends and healthcare benefits for those with an official celiac diagnosis. If you live in the USA that does not apply. The main reasons for seeking an official celiac diagnosis are psychological and social. Many people have a hard time not falling off the gluten free bandwagon without an official diagnosis. They find it easy to rationalize it all away as being temporary or due to something else. When you have an official diagnosis, you tend to take gluten-free eating more seriously. Socially, family and friends are more likely to respect and attempt to comply with your need to eat gluten free if you have an official diagnosis of celiac disease. Your physician is more likely to take you seriously as well if you have an official diagnosis because there are typically other health problems that are spinoffs which develop from celiac disease in time. One autoimmune disease invites others. There are no tests for NCGS. Celiac disease must first be ruled out. We do have specific tests for celiac disease. By the way, some experts believe that NCGS can transition into celiac disease. If your endoscopy/biopsy is only a month away, I would encourage you to stick it out and go back on gluten to get an official diagnosis. You still have time to get a valid test result if you start back on gluten now, 10g of gluten daily which is about the amount found in 4-6 slices of wheat bread.
    • BoiseNic
      dermatitis herpetiformis outbreaks while on strict gluten-free diet

      By BoiseNic · Posted

      I have the same problem. No matter what I eat, I seem to get a break out every 1 to 2 months. I do not do oats, citrus fruits, apples, onions and other foods also, as those cause reactions. The only time I have zero problems is when I fast. The only staple grain I have is quinoa, as that doesn't seem to cause me issues. I have linked mine to a microbiome imbalance. I am currently on month 3 of Skinesa. It's supposed to take 3 months before seeing results. I guess we'll see.
×
×
  • Create New...