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

Here Are My Symptoms... What Do You Think?

angelcots

Recommended Posts

angelcots Newbie
angelcots
Posted

Hello All! ...Can't say I'm happy to be here.

 

First off, I was tested for celiac over a year ago and it came out negative. The doctor told me that studies showed that people with IBS or PCOS tended to do better when they removed gluten from their diets... so that could explain some of my concerns. Of course I did not stop eating gluten because...why would I?

 

Fast forward to this month. While I have had a few unexplained sore throats this year... OH MY GOD! The first week of this month it felt like my throat was on freaking fire! It didn't even matter how many pain killers I took! I took off from work. I couldn't sleep. When I finally did drift off once, I quickly woke back up choking. There were other symptoms... not that I can accurately recall them now... but let's just say I felt like complete crap and was in total pain. After a full week, I felt much better but I never really felt like I completely healed from that week.

 

This past Monday, I went out to eat at lunch with coworkers. I got a wheat club sandwich. (BTW, about a year and a half ago... I tried the paleo diet for a few weeks. I felt amazing... but didn't stick with it. I became a vegetarian instead. lol! However, as soon as I went back to eating carbs/bread/gluten, I realized that I would cough after eating it every time without fail. I also felt really tired again. That lead to me being tested for celiac which was negative.) Anyway... That night after having the wheat sandwich, I was snacking and feeling great. I ate a few cookies... and it hit me all at once. My throat was on fire again! What the hell?! I knew it wasn't a coincidence. There was no way! Something was definitely causing this! So I wondered... What else has bothered my throat recently??? The sandwich! I coughed after eating it! That was when I did online research before vowing to go gluten free for a while... or at least until a preplanned road trip out of state next weekend. It's an experiment to see if I could be gluten sensitive. I'm completely desperate!

 

I feel like my throat has been better this time around. My lips are so great as of yesterday! My lips are always terribly chapped! But they are so soft and just wonderful right now! I don't think this is a coincidence because they are ALWAYS chapped no matter what I do. Some other symptoms I've experienced this week are night sweats, ear aches, headaches, neck pain, coughing, dizziness, insomnia, bad breath, nausea, and sore throat of course. I've actually been farting less... ugh... talk about TMI. I feel really good today... then again I did take two aleve this morning... and I still feel nauseous.

 

So... you all know more about all of this from experience. Do you think it's plausible that I have non-celiac gluten sensitivity or not? Let me know what you think. I really appreciate it! Thanks!

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

Celiac.com Sponsor (A8-M):


etbtbfs Rookie
etbtbfs
Posted
...

>So... you all know more about all of this from experience. Do you think it's plausible that I have non-celiac gluten sensitivity or not? Let me know what >you think. I really appreciate it! Thanks!

 

 

 

Lab tests don't matter.  What really matters is your symptoms.  Those symptoms seem pretty clear: get off gluten!  BTW, do you know that most wheat these days is the transgenic dwarf variety, which has much more gluten (and toxicity) than the heirloom varieties?

nvsmom Community Regular
nvsmom
Posted

Welcome to the board, even though no one wants to be here.  ;)

 

My son was a mild asthmatic before going gluten-free.  His asthma appeared to have disappeared a few months after going gluten-free.  It could be developmental but it was still nice to see his cough go.

 

I haven't heard about throat pain as a symptom of celiac disease.  It could well be though - there are over 300 symptoms of celiac disease (and most of them apply to NCGS).  It almost sounds like an allergy. Could it be a wheat allergy?  (There is not an allergy to gluten.)

 

If you do think you have NCGS, you should be gluten-free.  A gluten sensitivity is an immune response, although it is not an autoimmune attack like celiac disease, and not handling that can lead to oher health problems.  NCGS is not a benign thing.  Irritaing the body will lead to inflammation which leads to possible futures health issues.  Going gluten-free is a good idea.

 

Before you go gluten-free, are you sure you were properly tested for celiac disease?  Celiac tests are not perfect and can miss 25% of celiacs.  Getting multiple tests run will help insure against that.

 

These are the tests:

  • tTG igA and tTG IgG
  • DGP IGA and DGP IgG
  • EMA IgA
  • total serum IgA (control test)
  • AGA IgA and AGA IgG - older and less reliable tests which were replaced by the DGP tests
  • endoscopic biopsy - 6+ samples taken

You need to be eating gluten in the 2-3 months prior to testing, so don't go gluten-free uness testing is done.

 

Best wishes.  Hope you feel better soon.

Olim2005 Newbie
Olim2005
Posted

The digestion starts in your mouth. It is very possible that celiac disease is causing GERD or some sort of acid reflux right after your ingest the food. Acid reflux isn't always a burning sensation, it can be scratchy throat or cough too.

 

I tested negitive for celiac...so I went back to eating gluten for about 6 months and everything fell apart. I was tired, clumsy, I would trip a lot, drop things a lot, headaches, ears ringing, really bad pain up and down my legs after eating gluten, painful periods/cramps. Lots of pain. Since I went gluten free I haven't had any symptoms! So the test doesn't matter if it makes me feel better.

sunny2012 Rookie
sunny2012
Posted

Eliminate the gluten, feel better, stick with it. Otherwise, see your doctor for further investigation.

sunny2012 Rookie
sunny2012
Posted

That should have said

Eliminate gluten = feel better, THEN stick with it; otherwise seek further professional advice from your doctor.

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      @Jmartes71, I understand your frustration and anger. I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone. My doctors did not recognize nutritional deficiencies. Doctors are trained in medical learning institutions that are funded by pharmaceutical companies...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in...
    3. marion wheaton
      - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    4. Dorothy O.
      - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Even though my brother almost died in his 40s because of coeliac disease, no one ever told family members that we should be tested. As a result, I was almost 70 years old when an orthopaedic doctor suggested that I be tested for coeliac disease. My count was greater than 250. I had loved my bread, baking, especially pies and was never sick, but did not absorb...
    5. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,402
    • Most Online (within 30 mins)
      7,748
    alanhlam
    Newest Member
    alanhlam
    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

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
×
×
  • 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.