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

3 Months Down. But Still Having Ups And Downs!

jess-gf

Recommended Posts

jess-gf Explorer
jess-gf
Posted

So I have been gluten free since November 2010 and it's been getting easier and easier to maintain the diet. This is good. I've never cheated and only accidentally gotten glutened at thanksgiving, once when I licked an envelope, and once when I took a generic brand of tylenol. The original pain and nausea that caused me to go to the Dr in the first place is gone.

But, I feel like there are still things that are wrong with me and this past week some symptoms have become more and more frequent. Lately I've been feeling really bloated and full after meals, and like a pocket of gas is expanding and prodding at the top of my stomach causing discomfort. Eventually it settles down. But it gets worse at night - as soon as I lie down it's back and I also get mildly nauseous. I've been having a terrible time concentrating. I feel tired. My muscles ache. I feel sad and long for a day warm enough that I can go outside and at least sit in some sun.

I'm not sure what's going on. Gluten withdrawal? Or is this just a stage of healing? Is it a symptom of something else related to Celiac like Leaky Gut Syndrome?

Here's what I usually take for supplements: MethylCobalamin sublinguals, Bromelain, L-Glutamine, a probiotic that I discovered expired last year (oops) and a daily vitamin gummy. I stopped taking Bromelain and L-Glutamine a bit ago suspecting they were making me feel bad but I don't think it was them, so I started taking L-Glutamine again today.

This weekend I bought some more supplies thinking I just need more support through this. I purchased some liquid vitaminsOpen Original Shared Link (the gummies really don't have much in them), acidophilus Open Original Shared Link, calcium-Magnesium Open Original Shared Link, and fish oil Open Original Shared Link. Hopefully this will help.

Has anyone else had an experience like this?

I've also read some interesting research on the Paleo Diet. I am concerned that it's just a fad, but maybe a complete cut of all grains (rice is pretty much the only form I eat) will help? I've also been dairy free for about a month.

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

Celiac.com Sponsor (A8-M):


txplowgirl Enthusiast
txplowgirl
Posted

Before you cut out the grains I would suggest cutting out dairy first. Dairy causes gas and stomach discomfort as well. I have a feeling it's the dairy, but that's just my opinion.

After a month if that dosen't work kick out the soy, then the grains.

Just a thought.

And yes, you could still be experiencing withdrawal symptoms on top of everything else. Another thing is have you checked all those supplements you're taking. Like for barley grass, wheat grass, etc. They can be very sneaky and get by you if you're not careful.

Hope you get to feeling better.

Kelly777 Newbie
Kelly777
Posted

Check your Bromelain and L-Glutamine online for adverse/side effects. Those are two supplements I will not take after reading about them. I agree that it is very likely that you have lactose intolerance. I have been gluten free since the end of September and I just NOW am able to tolerate hard cheese. I cannot tolerate soy. It has always messed with my system long before I found out I was gluten intolerant. It is a rocky road for sure.

jess-gf Explorer
jess-gf
Posted
  • Author

I've been off L-Glutamine and Bromelain for at least a week now, though I just started taking L-Glutamine again today. I didn't feel any better while being off of them. I've also been dairy free for about a month. :/

cap6 Enthusiast
cap6
Posted

I have been taking L-Glutamine for the past 2 months for constipation but haven't noticed any difference so wondered if it was helping. It is supposed to help the gut heal though.

  • 4 weeks later...
jess-gf Explorer
jess-gf
Posted
  • Author

Thought I'd update this. It's been 4 months now! Feels like an eternity. It seems like I keep taking 1 step forward and then 2 steps back. I'm still dairy free and mostly soy free except for my gluten-free soy sauce I use in stir frys. I've also recently decided to give the paleo diet a whirl since I haven't been feeling remarkably better since going gluten free. It's only been a week so far so it's hard to say if there's been an improvement or not - it seems like no matter what I do I discover something else that gives me a stomach ache!

I stopped taking bromelain since my stomach ached after taking it. I still take liquid vitamins, and a calcium-magnesium suppliment. If I remember I'll take a probiotic and fish oil.

It feels like my stomach is getting even more sensitive than before. I stopped drinking regular coffee and started drinking decaf, but I found that made it feel angry and burny too. I switched to only drinking tea and eventually that made it feel achy and burny. So now I just drink decaf tea. I tried a cup of jasmine green tea with honey today and even that bit of caffeine is bothering me. I ate a small bar of dark chocolate last night and that was too much - I guess I can only have one bite of that.

A few days ago I made my own turkey sausage (recipe here: Open Original Shared Link) and that made my stomach burn. Argh why! It wasn't even that spicy. I feel like the only real thing that's improved since being diagnosed is that my constipation has gone away. At least there's something. :(

  • 3 weeks later...
BrookeT Apprentice
BrookeT
Posted

Hello,

I can definitely empathize with you. I am about 7 1/2 months gluten free and am still having some issues myself. My level of damage was a Marsh III which is the highest amount you can have. I think the length of time it takes to heal is different for everyone and depends on the amount of damage you have to your intestines as well. I've learned that you have to be patient, the healing process takes time. Until your intestines heal, your body will have a difficult time with certain foods. I've read that it can take up to 2 years or more for your intestines to fully heal and that's without any gluten in your diet.

Try to eat less processed foods and more simple whole foods. Watch out for greasy, spicy & sugary foods as well. Be careful with decaf & instant coffee as some can contain gluten. Try chamomile, peppermint and ginger teas. They are soothing to the stomach. If you crave chocolate, Enjoy Life brand makes some yummy chocolate bars made from rice milk. I get them at Whole Foods.

Hang in there and try and stay positive. At least you have noticed some improvement. Hold on to that and know that more improvements will come gradually over time. Keep your diet simple for now and see how that works for you. Also, make sure all of your supplements are gluten free.

Have you had any of your vitamin levels checked by your Dr.? It would be a good idea to have your Dr. run a complete blood panel as well as having your vitamin levels checked. (Such as B & D) I don't know if you were diagnosed with celiac or just have a gluten intolerance or sensitivity, but many people with celiac are deficient in certain vitamins, so it would be worth checking into.

Feel free to contact me if you have any questions. : )

Thought I'd update this. It's been 4 months now! Feels like an eternity. It seems like I keep taking 1 step forward and then 2 steps back. I'm still dairy free and mostly soy free except for my gluten-free soy sauce I use in stir frys. I've also recently decided to give the paleo diet a whirl since I haven't been feeling remarkably better since going gluten free. It's only been a week so far so it's hard to say if there's been an improvement or not - it seems like no matter what I do I discover something else that gives me a stomach ache!

I stopped taking bromelain since my stomach ached after taking it. I still take liquid vitamins, and a calcium-magnesium suppliment. If I remember I'll take a probiotic and fish oil.

It feels like my stomach is getting even more sensitive than before. I stopped drinking regular coffee and started drinking decaf, but I found that made it feel angry and burny too. I switched to only drinking tea and eventually that made it feel achy and burny. So now I just drink decaf tea. I tried a cup of jasmine green tea with honey today and even that bit of caffeine is bothering me. I ate a small bar of dark chocolate last night and that was too much - I guess I can only have one bite of that.

A few days ago I made my own turkey sausage (recipe here: Open Original Shared Link) and that made my stomach burn. Argh why! It wasn't even that spicy. I feel like the only real thing that's improved since being diagnosed is that my constipation has gone away. At least there's something. :(

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

Celiac.com Sponsor (A8-M):


Evangeline Explorer
Evangeline
Posted

L-Glutamine causes me to have a gluten-like reaction. Also, soy causes many Celiacs to have a gluten-like reaction --some people say it is worse than gluten itself.

Another idea is trying the Gluten Society's Advice and try going grain-free. I suggest you google them and watch some of their videos for more information. According to them, corn is 55% gluten and they believe Celiacs don't only react to the gliadin in wheat, barley and rye, but also to the gluten in corn and rice (although less in rice). Those are the three main things that might help you. Best of luck!

Igg postive Rookie
Igg postive
Posted

I have stomach bloating right under my ribs. The area where my gallbladder operation was is painful too. At lunch today I had a pain sharp pain in the bottom/ middle of my ribs then it eased off. The pain seems to be easing off slowly and overall it is getting better. It has been a month for me on the diet. I have noticed it is easier for me to do activities that require bending over. This was very uncomfortable to me before. I am glad you posted because I was wondering how long these symptoms can hang on. Was your blood tests/biopsy positve for Celiac?

dube Contributor
dube
Posted

Try to eat less processed foods and more simple whole foods. Watch out for greasy, spicy & sugary foods as well. Be careful with decaf & instant coffee as some can contain gluten. Try chamomile, peppermint and ginger teas. They are soothing to the stomach. If you crave chocolate, Enjoy Life brand makes some yummy chocolate bars made from rice milk. I get them at Whole Foods.

What about decaf tea? I drink that every night and I still think I'm being glutened...

I did figure out I am having a problem with fractose...

cap6 Enthusiast
cap6
Posted

It took me a year to feel like dancing again. At 13 months I still have days when I hurt and am unable to trace it to any particular item. It can take several months before dairy products will agree with you. Just now I can eat a little bit of cheese or a bite of ice cream once in a while. Lots of whole foods and nix to the processed stuff. When I first went gluten-free friends loaded me with gluten-free muffin mixes, cakes mixes etc..... it's still all in the freezer! Takes a long time for the gut to heal. From what I have learned on this site the more damage and the older you are the longer it can take to heal. Hang in.. you are getting better, a little at a time. :)

sb2178 Enthusiast
sb2178
Posted

Have you been checked for an ulcer?

Archived

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

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


  • Member Statistics

    • Total Members
      131,676
    • Most Online (within 30 mins)
      7,748
    AW1851
    Newest Member
    AW1851
    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

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.