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

Newbie Introduction And Question For The Ladies


ksymonds84

Recommended Posts

ksymonds84 Enthusiast

Hi everyone

I am 42 years old and was diagnosed as spastic colon in my early twentys. I've had symptoms come and go all my life mainly diarreah, mouth sores, psoriasis, and mild joint pain. Last November and December were terrible for me. Diarreah every morning, mouth sores, and muscle cramps in my calves and feet. My hubby and I own two restaurants and have a rebellious teenage daughter so I chalked it up to stress bugging my IBS. My brother in law who is a Celiac came to stay with us for Christmas and thought I should be tested for Celiac because we share alot of the same symptoms. I first went gluten free for about 5 days and the diarreah was gone so I called doc and set up celiac panel for two days later and went back to eating gluten which just gave me a ton of gas. I went gluten free again the day after the test and started feeling better again. The tests came back a week later as negative. I felt so good on the diet that I decided to just stay with it since I was feeling fantastic, no D or mouth sores etc. I had one screw up when I thought klondike heath bar ingredients sounded o.k. and woke up at 3 am with alot of uncomfortable gas but no D in the morning. So now my question is that I have been feeling wonderful except when I got my period this week, the D and flatuence came back but not everyday. Is this a normal thing to have problems during your period? I've been careful with diet so I don't THINK i was glutened. I guess I was just hoping I had an answer and would have smooth sailing. Thanks for any input!

Kathy


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



Celiac.com Sponsor (A8-M):



HappyMomof5 Newbie

Kathy,

I also had diarrhea, mouth sores, psoriasis, and mild joint pain. (I attributed D to a "virus", mouth sores to acid reflux, psoriasis to just familial dry skin, and joint pain to my scoliosis. Since going gluten-free, they're all gone. :) )

I had a positive biopsy, for which I'm grateful because I never would've believed I had celiac otherwise. I've been Gluten Free since this January 4th!

I had withdrawal symptoms and mood swings, crying jags, and deep highs and lows, then my period came 2 weeks from the last time I had it. I'm 36 and that's never happened before.

So yes, I would say the lack of gluten is affecting your hormones, and will change your bowel habits. The frequent diarrhea will stop, but many celiacs continue to have it off and on, or when they get gluten accidentally.

I have a celiac friend who had to take the 'Pepto Bismol treatment' of 1 Pepto tablet 3 times a day for 6 weeks in order to get his D to stop. Some bad celiacs have to do that treatment 2 or 3 times, depending on the amount of damage in the small intestine.

I've heard you begin healing within a week, and sometimes it takes 6 months to a year according to some doctors. Really, it depends on the damage done, but congrats to you for figuring it out on your own.

When I was pregnant I would throw up if I ate gluten the first 4 months, so I learned to avoid it. I had 5 babies at the rate of 1 every 2 years. (Ages 2, 4, 6, 8, 10) :) I credit those 4 months every so often as keeping me healthy for the last 10 years.

I think even a little bit of time gluten free makes a big difference.

Good luck,

~Heather

Gwen B Rookie

Hi,

I've been gluten-free for almost three months and yes I did find that my bowel movements took a while to adjust. I used to almost always have mild D before the diet. After a month gluten-free I realised that the gas anc stomach pain was actually due to dairy intolerance. I gave those up and then gave my body time to adjust again, this time mild C especially if i had accidetally had some gluten or cassein, which I didn't realise was in soy and rice cheese. In the last week and a half I have been suffering again and my body adjust again, this time the culprit is soy. I'm now wary of eggs and am not having eggs at the moment just in case.

All this ditective work! It's frustrating but I hope to be feeling as good as I did the first three weeks soon ( I had an accidental cc last night and still trying to detect where from, so am not so happy today :( )

Definately check out the lactose intolerance, it's very common to new gluten-free free folks and may be just temporary, six months or so.

Good luck!

Sweetfudge Community Regular

i also have very "gluten-like" symptoms when it comes to that time of the month. kind of annoying. and i agree with everyone who said you should cut out dairy for a few months. i did and it helped so much. then i was fine adding it back into my diet for awhile. now a year later, wondering if it might be bothering me. that or soy. welcome to the forums by the way :)

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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748

    maggie23
    Newest Member
    maggie23
    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

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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!
×
×
  • 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.