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

Frustrated, Not Sure What To Do From Here!


Trisarahtops

Recommended Posts

Trisarahtops Newbie

Hi everyone, I'm new here. I guess I'm here as sort of a last resort for me.

 

I'm 19 years old and have had digestive issues my entire life. From a really young age, I had frequent stomach aches, chronic constipation, always had a low body weight, headaches, and various other symptoms. At age 16 I was diagnosed with IBS but I didn't really agree with that diagnosis. I went on to seek further help at a gastro doctor who did a colonoscopy and an upper GI scope. He said my biopsy results were not positive for celiac, but he still believed that that diagnosis fit for me. So I started a 100% gluten free diet. It worked wonders for me at first!

 

But now, just about a year and a half later, I am feeling awful. I am SO careful as far as what I eat (no cross contamination, I make all my own food, etc.) but I am sick more than I am healthy. I have migranes, nausea, stomach cramps/aches, and overall feel like garbage. I scheduled an appt with my gastro doctor but I'm just so discouraged and not really sure what to do from here. I guess I'm here to ask if anyone's experienced anything like this and what you think I should do. I'm just so frustrated; no one should have to live this way.


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



Celiac.com Sponsor (A8-M):



notme Experienced

it's good you're going back to see your doctor to make sure something else isn't going on.  that being said, have you switched shampoos, etc, personal care products?  using a different pet food?  maybe somebody changed ingredients and something that was safe for you is not anymore.  we are constantly chanting "check the label, check the label...."  lolz

 

i have that sort of reaction to soy - headache, gut distress, fatigue, etc.. - completely independent of a gluten reaction, as it doesn't last as long as a gluten reaction.  <just for example)  maybe try keeping a food journal and note how you are feeling vs what you have had to eat.  that was how i figured out the soy.  i can have a little, but if i load up on it, *pow*  (and also *ow*)  

 

(just something funny i found out from food journal:  eggplants knock me out, for some reason, i eat it and i have to go to sleep.  wierddd.....)

 

i hope you get it figured out and it's not something serious - good luck :)

beth01 Enthusiast

I know you probably don't want to hear this, but it sounds like you are getting glutened from some where.  You have to listen to your body.  I know that I used to get terrible migraines my whole life and they magically disappeared after going gluten free.  When I even get a headache now it's a tip off that I have been glutened.

 

Do you share your living space with others?  Is your house completely gluten free?  What have you changed recently,  any health and beauty products, new foods, pets?  Check all your labels, some companies change their recipes or where they process their food so it might be on shared lines.  I know it stinks trying to find out just where the gluten is coming from but if you can't track it down, you aren't going to feel better.  Maybe talking through the last few weeks will help pinpoint just what has changed.  Keep a diary of EVERYTHING you put in your mouth, what you do during the day and when your symptoms begin. It will help you pinpoint just what is making you sick, you find a pattern.  Also, go back to the basics, foods you know don't make you ill.  Then start slowly adding things back in, one new ingredient every three days.

 

I understand your frustration, we all do.  I hope you figure it out!

beth01 Enthusiast

LOL notme.  I was typing this as you were posting.  Get off my brain wave!!!

notme Experienced

LOL notme.  I was typing this as you were posting.  Get off my brain wave!!!

and we basically said the same thing - hahaha!   ^_^  i am a huge food journal pusher - if something is giving me trouble or if i feel like gluten is sneaking in somewhere, i do the journal thing.  the first time i did it, i was amazed at what i didn't remember eating unless i wrote it down.  lolz, refer to the memory loss thread  ;)

beth01 Enthusiast

What were we talking about? Oh that's right, it was squirrels.  LOL :)

mbr22m Rookie

I agree with the others. Check all your beauty products. Both my chapstick, lipstick, shampoo and conditioner had gluten in them. Even meds you get from pharmacy. I recently got letter from mine that they can't guarantee my meds are gluten-free since ingredients are sourced from all different suppliers.


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

What do you eat?  Some have resolved symptoms by eliminating processed foods: Open Original Shared Link

NatureChick Rookie

Because you say that you already prepare all of your own foods from scratch, I'd recommend doing a food/symptom diary in combination with a rotation diet. And in this case, I'd probably keep note of what you use to prepare food as well just in case something in your kitchen became contaminated without you realizing it. 

When choosing foods to eat on your rotation diet (four-day cycles), I'd become familiar with some of the other common food intolerances (lactose, fructose, night shades, alliums, etc.) and the FODMAP diet. That way, you can make sure that you are only incorporating one suspect food at a time as you're doing your four-day cycles. I do know that cramping can be caused by both lactose and fructose intolerances though I'm less familiar with which ones cause nausea. There have been some studies that have found that some people with non-celiac gluten sensitivity are actually intolerant to fructans, which wheat and alliums are both high in.

 

I totally agree that IBS in itself is not a diagnosis so good to hear that you're not settling for that answer ... which basically says nothing more than the doctor doesn't know what is going on.

Edit: You may also want to get tested for H. pylori if you haven't already because it can cause nausea too.

dilettantesteph Collaborator

Because you say that you already prepare all of your own foods from scratch

 

I saw "I make all my own food", but not "from scratch".  That could be significant.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Nimsay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Confused about gluten challenge symptoms

    2. - Jacki Espo replied to Pamp8's topic in Dermatitis Herpetiformis
      2

      Dermatitis Herpetiformis

    3. - trents replied to Pamp8's topic in Dermatitis Herpetiformis
      2

      Dermatitis Herpetiformis

    4. - Pamp8 posted a topic in Dermatitis Herpetiformis
      2

      Dermatitis Herpetiformis

    5. - leenora replied to MagsM's topic in Related Issues & Disorders
      7

      Inflammation and Menier’s disease link?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,941
    • Most Online (within 30 mins)
      7,748

    kazzie21
    Newest Member
    kazzie21
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience with gluten is actually not unheard of! Some people with non-celiac gluten sensitivity (NCGS) or even celiac disease report an initial ‘honeymoon phase’ during a gluten challenge, where symptoms temporarily improve before worsening again. This could be due to your body adjusting or even a temporary immune modulation. Since you’re only 2.5 weeks into the challenge, it’s possible more symptoms could reappear if you continue. Celiac testing (bloodwork and endoscopy) is most accurate after a full 6 weeks of gluten, so sticking with it for now is wise. That said, your joint/tendon issues (especially the Achilles stiffness) are interesting—they can be linked to celiac disease or other autoimmune conditions (like rheumatoid arthritis or even reactive arthritis). Have you been tested for celiac antibodies yet? If not, that’s the next step. If the tests come back negative, NCGS or another immune-related issue (like FODMAP intolerance or mast cell activation) might still be at play. It’s also worth noting that recurrent miscarriage and elevated liver enzymes can be linked to celiac (it’s often underdiagnosed in women with ‘atypical’ symptoms like yours). But if celiac is ruled out, a rheumatologist or a gastroenterologist who specializes in immune-related GI issues might help explore other possibilities (like Hashimoto’s, Sjögren’s, or connective tissue disorders). Hang in there—it’s frustrating not to have clear answers, but you’re doing all the right things by paying attention to your body and pushing for testing. Keep us posted on how the rest of your gluten challenge goes!
    • Jacki Espo
      Hi there @Pamp8  yes I've had dermatitis herpetiformis and a negative test for celiac and a negative biopsy. I had stopped eating gluten before taking the test.  I have had an inconclusive genetic (?) test.  I developed the same all body rash.  It was one of the worst experiences of my life and I am sorry you're experiencing it.  What helped me: 1). I stopped eating oats of any kind. 2). I also took some anti-biotics that were not prescribed for dermatitis herpetiformis but I read they could help. 3). Salty food exacerbates it for me.  Now I have a small flare up any time I get cross contamination like from french fries or a shared grill at a restaurant but it's not as bad as it used to be.  Wishing you relief soon. 
    • trents
      Welcome to the forum, @Pamp8! As to your first question, it is possible to have only the epidermal form of celiac disease but it is not common. Most people who have dermatitis herpetiformis also have damage being done to the villous lining of the small bowel.  As to your second question, most likely you are getting some gluten contamination from an unknown source on occasion that you are unaware of and are not suspecting. It could be something like in a medication or supplement you are taking or an oral hygiene product you are using or a spice you are using in your cooking. You might also look into a low iodine diet as iodine is known to exacerbate dermatitis herpetiformis. As to your third question, many who suffer from dermatitis herpetiformis find it is a stubborn problem and difficult to completely control.
    • Pamp8
      I'm new here, although in the past I know I've read some of the messages.   My doctor and I have long suspected that I have celiac. I have several other autoimmune illnesses. But, my celiac biopsy was negative, so I started eating a lot more gluten.  Over the last several years, I've had minor bouts of an extremely itchy rash that I was correlating to gluten, but it wasn't very bad and would improve in a short amount of time. Last year, I had a bout that was a bit worse, but it went away rather quickly, so I didn't think too much about it. Fast forward to this year. I have had a REALLY BAD case of it, for a few months, so I went to a dermatologist, and she diagnosed dermatitis herpetiformis without a biopsy. It was pretty obvious to her that it is dermatitis herpetiformis, but she said that if I wanted her to, she would do a biopsy. She said that I have just become more sensitized over time. She prescripbed Dapsone gel, which helps a lot, but I run out of it long before I'm eligible for a refill. So, I am going CRAZY. It is on my arms, legs trunk, everywhere, and it itches like chiggers. If I get even the slightest bit sweaty, it is so unbearable. I've been 100% gluten free since April, but it keeps flaring up. (I've been under intense stress, too.)  My questions are:  1.) Do many people have celiac without a positive celiac biopsy?  2.) How long will the dermatitis herpetiformis persist, even though I'm 100% gluten free? 3.) Is my story a common one? Thanks so much!
    • leenora
      P.S. I also suffer from Meniere's and Hashimoto's thyroid disease, osteopenia since 40 y.o. These all were diagnosed before the Celiac Disease! And I believe it is all interconnected.
×
×
  • Create New...