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

Want To Share My Story, And See What People Think Possibly Celiac


bman34

Recommended Posts

bman34 Newbie

Like most posts I've read here it seems many people are in the same boat I'm on. My whole life I've had difficulty with a 'sensitive' stomach, and difficult bowel movements. It's funny because I've always thought that the difficult BM's is just the way it is, and everyone is like that. Since BM's are such a taboo subject it took me living with my room mate to really notice that I was not normal. So like most people I started to look for answers to my issues. I'm 34 now, and up until now my issues haven't really been what I would call severe. So it was easy to shake the issues off, or after a difficult BM I would just feel ok. During my mid 20's I developed pretty deep anxiety, and general negativity. I also at that time gained some weight so I had though that it was due mostly to my weight gain (around 50lbs)

Routinely I would meet people that were severely overweight, and seemed to be fine digestive-wise. I wouldn't call these people *healthy* by any stretch of the word, but I always wondered why they had more energy than I did and why even during physical activity seemed to not get dehydrated/tired etc as quickly.

Anyway so to get to the point, last week I started having severe stomach aches/cramps, with bouts of diarrhea. I have long since backed off of my milk/lactose consumption so I was pretty surprised that I was feeling so horrible. I went to the Doctor, and listed off my symptoms:

  • Difficult BMs/Diarrhea/Severe stomach cramps
  • Sluggish/Tired all of the time (not feeling sharp/foggy)
  • Depressed/Anxious/Not interested in old hobbies etc..
  • Dehydrate easily

He recommended I remove Gluten, and was going to give the blood test for Celiac, but felt it wasn't very telling in his opinion so he didn't do the test. He instead did a bunch of other blood tests, and took a stool sample to look for paracites/amoebas white blood cells etc. All of that stuff so far has come up negative.

So Friday night I gave up gluten, and have been free if it all weekend. I feel MUCH better already. I feel sharper, felt like I got better sleep, no bad BMs, no stomach aches (like last week), less anxiety, feel sharper. I almost feel like I can SEE better!

So my concern is that I have a placebo effect, and haven't found the real issue. It's almost too good to be true so far. I am excited to possibly have found the issue that has been plaguing me for most of my adult life so far.

Can anyone offer their opinion from personal experience? Does it seem that this is celiac? What advice can anyone offer?

Thanks in advance!


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



Celiac.com Sponsor (A8-M):



shopgirl Contributor

I think you need to relax and enjoy it. :) I'm a worrier, too, but if you feel better when you don't eat gluten, be glad about it. It could be Celiac or it could be a gluten intolerance. If you really want to know, you can go back on gluten and find a doctor to test you. But you need to be eating gluten daily for your test results to be normal.

Dixiebell Contributor

I had extreme fatigue, depression, anxiety, lack of intrest in anything, my stomach would wake me in the night(no details), very low vit D, all over joint pain, migranes for years, sinus problems, I think that is all for now. All of this has resolved itself almost completely since starting gluten free in May. My celiac test were neg. I agree, if it makes you feel better, do it.

bman34 Newbie

I think you need to relax and enjoy it. :) I'm a worrier, too, but if you feel better when you don't eat gluten, be glad about it. It could be Celiac or it could be a gluten intolerance. If you really want to know, you can go back on gluten and find a doctor to test you. But you need to be eating gluten daily for your test results to be normal.

Well... I am a worrier, and I think it's a bit warranted after years of not knowing and having these issues. :-)

Any idea when I should feel 100% normal day to day? How long did it take you on a no-gluten diet to get there?

shopgirl Contributor

Well... I am a worrier, and I think it's a bit warranted after years of not knowing and having these issues. :-)

Any idea when I should feel 100% normal day to day? How long did it take you on a no-gluten diet to get there?

It took me a long time to get a diagnosis too. :)

I've been gluten-free a little over a month and still feel symptoms. My GI doctor said it could take months before all my symptoms disappear completely. But knowing the source of all my problems has at least begun to put my mind at ease.

The anxiety, however, was one of my first symptoms to disappear gluten-free. I stopped having regular anxiety and panic attacks after about two weeks. Hope that helps.

T.H. Community Regular

From what I've read here on the forums, it depends greatly on the symptoms.

Symptoms that are from the gluten and an immediate reaction seem to heal up quick. Symptoms that result from long term damage can take longer.

When I finally got completely gluten free (it took me a while to figure out that my gluten tolerance was a bit lower than the norm), I noticed a difference in about 1-3 days. If I get glutened, it takes me about a day or two for the worst symptoms to go away, and a week or two for some of the others to clear up. So having a nearly immediate improvement like you are noticing? Not unusual.

bman34 Newbie

So I had a setback today. I had a slightly loose stool, and I got pretty discouraged. I still however am feeling much better, and can still think better. As shopgirl said I feel 0 anxiety compared to last week for example. It's quite liberating actually.

When did everyone get their BM's to firm up? I'm looking forward to a time when I haven't had loose BMs for weeks, and perhaps months.

At least this morning I didn't have a stomach ache or cramps in my abdominal area so that's good.


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



Celiac.com Sponsor (A8-M):



bman34 Newbie

I think it may be the salads I'm having with dinner that are loosening me up. Anyone else get loose from salads? I still feel way better than I did with wheat. What a huge difference. It's almost like I'm a new person. It's funny that something that is such a staple in the diets of the world such as wheat can mess so many people up so badly. There really needs to be more information about this issue out 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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

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

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    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

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @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
      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
      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.
×
×
  • 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.