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):
  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

Rookie Trying To Cope.. Think Gluten's The Culprit..


LundqvistSaves

Recommended Posts

LundqvistSaves Rookie

Hello everyone,

Please forgive me if this isn't the proper place to post, but I'm a 26 y/o male and I've been sick for the past year with no help from three different gastroenterologists. I think it might be gluten, but my test came back negative for celiac's, so perhaps just an intolerance? My main symptoms are a lot of gas, GERD, overall crappiness, fatigue, lack of sex drive, depression, and mostly a cramping pain in my upper stomach right below my ribs. This seems to be the most prevalent, along with a crazy bloating. I've been taking Nexium which has helped with heartburn, but that's about it. I also started taking this probiotic called VSL#3. It's really strong, take a look at it if you aren't familiar. I can't tell much yet from it since it's only been a week. I've also been unresponsive to any IBS meds my doctors have tried on me, so that leads me to think maybe it is gluten causing the trouble.

I went gluten-free back in October for about a month, but I couldn't tell if I was feeling any different. Unbeknownst to me, I was also consuming potatoes/french fries once a week unaware that they could contain gluten, as well. So, I'm really not sure what else to do. I've decided to go gluten-free again, and started about 4 days ago.

I'm looking to feeling better and I hope going gluten-free helps. It's put a lot of strain on my relationship. Some days I just don't know what to do anymore. I miss having fun with friends, feeling well enough to work out, and just feeling good about myself. I've also gained 20 pounds. Has anyone else had any similar situations? I hope maybe I can get better within a month..

Thanks a lot, everyone.


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



Celiac.com Sponsor (A8-M):



andrewp Newbie

Man Im 26 this year and for the last year have been trying to cope with the same s$#& as you have. Its hard. These days its enjoying the small things that seem to keep getting harder and harder. Summer time hits and you wanna have a beer and bbq.....CANT. I know what you mean by the relationships and depression hitting....I assumed it was just the great paying, but totally s$#&ty job i hate working that i was doing...now it seems to be gluten this and gluten that.

Hang in there man...for me 4 years ago this wasnt a problem... im hoping a new job will settle more nerves down and i wont be rocking a crazy schedule and be able to eat properly.

Thats what the majority of this is...eating healthy...and then theres the shampoos and soaps and stuff you gotta use differently!

But once again hang in there! Im in the same boat as you....frustration and panic attacks more severe than ever now but it will pass!

IrishHeart Veteran

First of all guys, you can have beer and BBQ, it just has to be gluten-free. ;)

Welcome to the Forum!

Your raise a lot of questions. Let's see if I can help a little and other members can chime in. This is an amazing group of knowledgeable and supportive people.

Your symptoms sure sound gluten-related and negative test results do not automatically exclude celiac or NCGI. Many of us tested negative.

IBS is a common label given to a set of symptoms. We joke on here that it stands for the doctors' thinking: "I Be Stumped"

Many of us heard that, too.

GERD and IBS? I had those miserable symptoms for 25 years. No meds ever helped. Since DX and being gluten-free, they are GONE.

Regular Potatoes are gluten-free.

French fries, however, made in a fryer that is used for frying breaded products are not okay, as they will be cross-contaminated.

Taking a probiotic is a very good idea.

Unless you have a contact wheat allergy, too and DH (Dermatitis herpetiformis) you do not need to excessively worry about shampoo or topicals. Some people say they have reactions to wheat protein in these products, but the majority do not. I avoid them personally, but that's just me.

Be careful of your lipstick, though as that may get in your mouth. :D This goes for kissing gluten-eaters too. They should brush their teeth before getting too "involved". :)

Instead of writing a giant post again, :lol: may I direct you to the Newbie Info 101 thread in this section (COPING) and see if any of that information is helpful to you?

Best wishes.

It takes a lot longer than a few weeks to see symptom resolution. You'll have to be patient. Hang in there.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Stegosaurus replied to HectorConvector's topic in Related Issues & Disorders
      349

      Terrible Neurological Symptoms

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      349

      Terrible Neurological Symptoms

    3. - Aretaeus Cappadocia replied to Irishgirl5's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Digestive symptoms yet negative celiac screening

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,995
    • Most Online (within 30 mins)
      10,442

    Jody Booker
    Newest Member
    Jody Booker
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Stegosaurus
      I've been following a low carbohydrate Keto AutoImmune Protocol diet.  It's all I can handle.  I'm so excited to learn about thiamine from you.  The benfotiamine should arrive today.  I sure hope it's my missing piece!!!
    • knitty kitty
      I respectfully disagree, @Scott Adams.   Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss.  The body will use stored fat and muscle to provide energy in thiamine deficiency.  This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass.  Using stored fat and muscle for energy requires less thiamine than the amount of thiamine required to process carbohydrates.  Thiamine deficiency causes gastrointestinal Beriberi, a localized thiamine deficiency in the digestive tract, which results in dysbiosis, inflammation, and abdominal pain.  Carbohydrates can remain undigested in the intestinal system, which bacteria feed on, encouraging SIBO, and prompting dysbiosis, leaky gut, and inflammation.  Following a low carbohydrate Keto diet, like the AutoImmune Protocol diet, can help because it removes excess carbohydrates that the bacteria feed on.  SIBO can cause weight gain due to inflammational edema of the intestines (water retention in the tissues of the intestines), gas, and slowed transit times.  SIBO bacteria can absorb nutrients from your food before you can, resulting in additional deficiencies of other B vitamins and nutrients.   Thiamine deficiency is corrected with high dose Thiamine Hydrochloride, Benfotiamine and/or Thiamine TTFD (tetrahydrofurfuryl disulfide).  High dose thiamine in the form Benfotiamine has been shown to promote intestinal healing.  It improves "leaky gut".  High dose Benfotiamine will improve the gut microbiome in favor of beneficial bacteria.  Thiamine TTFD is beneficial for neurological issues.  Thiamine TTFD improves brain function and is beneficial for mental health issues such as depression and anxiety, and other neurological problems like Ataxia and Brain Fog.    Methylated (activated) B Complex vitamins help correct Thiamine deficiency because all eight B vitamins work together.  Vitamin C and the four fat soluble vitamins (A, D, E, and K) are needed as well.  Minerals like Magnesium, Calcium, Iron,  Potassium, and others may need to be supplemented as well.  Thiamine and Magnesium make life sustaining enzymes together.   Supplementing with high doses of Thiamine and other water soluble B vitamins will lower pain and inflammation, improve fatigue, improve muscle mass gain, as well as regulate the intestinal microbiome!  So, @Stegosaurus, you can get healthier while improving gut dysbiosis at the same time! References: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/
    • Aretaeus Cappadocia
      You may know this already, but in addition to what you've described, you may also want to get a genetic test. About 1/3 of people have one of the genetic markers that are necessary (but not sufficient) for getting celiac. If your son is one of the 2/3 of people that don't have the marker then it is almost certain he does not have celiac. (The genetic test won't tell you if he has celiac, it can only tell you whether or not he is susceptible to getting celiac.)
    • JennMitchell79
    • Scott Adams
      That is really interesting, especially because it points to how the gut microbiome may still stay altered in celiac disease even after going gluten-free. The idea that a fiber like inulin could help feed beneficial bacteria and reduce inflammation is encouraging, although I imagine some people with celiac disease or other gut issues might still need to introduce it carefully depending on tolerance. It definitely feels like an area worth watching, because anything that could help support healing beyond just avoiding gluten would be valuable.
×
×
  • 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.