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Stomach Cramps


casnco

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casnco Enthusiast

Well, it happened again. Cross contamination. I think from the salad bar at work. Who knows. I am assuming it takes several days for symptoms to show up for me. Everytime the symptoms are different. This time it was sever stomach cramps. I haven't had any for over a year! I have been using herbal supplements that have kept stomach issues at bay.

So, long story short the cramps persisted for 3 days off and on. They started with 15 min of cramping and gradually increased in duration. Before they come on I feel intestines moving as if I need to have a bowl movement. But alas no bowl movement happens. Just cramping of my stomach. The pain is so sever that after the fifth episode I went to the emergency department at the local hospital. Fortunately for me they cramping persisted until the doctor saw me. He gave me demeral and phenagrin. Yea! And Vicoden for recurring episodes. I hate using a narcotic but I can not take the pain. Also I have eaten next to nothing for the past 3 days. When I have eaten about four hours later I get cramping.

I tell all of this to ask a question or maybe this is just an observation.

It seams like when my body is trying to digest food and is unable to digest the gluten it causes the parastalsis activity in my intestines to to cause a spasm that affects my stomach and cause the cramping. Then I feel asthough the irritation has caused inflamation in the stomach and the intestines which makes each episode of the cramping more intense and the duration of the cramp longer. Thus producing a vicious cycle. The ED trip stops the inflamation. When I take the vicoden, it doesn't stop the cramping but helps eleveate the pain.

Do any of you have a similar experience? Have you found some less expensive way to control the pain without an ED visit? I feel like such a fool when I need to go the ED. I know the cause and work very hard at not getting cross contaminated. I never eat in our cafeteria at work because I know the risk. But I had a lapse in judgement. I thought it is only a salad bar. They have the croutons in totally seperate area. Surely it should be safe. Boy was I wrong.

I know this is a long post but if anyone has any suggestions I am open and in despirate need of help.

Thanks

Debbie


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Ursa Major Collaborator

When I get cramping or severe stomach pain, I use a homeopathic remedy called 'Sepia'. I use the 30c strength, and take four of the little granules when I get pain. I repeat every few hours if needed until the pain is gone.

I find that is the only thing that seems to help for me. Pain killers are hard on the stomach and can make the inflammation worse, while masking the pain.

YoloGx Rookie

I have found that by taking acidophilus and bromelain/papain with pancreatic enzymes really helps against CC. The sooner the better. For me it has made a huge difference. I take it if I even think it might be a problem.

Later, if and once the damage is done, continue with the above and also add extra fibronyltic enzymes such as a double dose of nattokinase or serrapeptidase or serrapeptase to counteract inflammation and scar tissue. Do this for a few days til you feel better. Do this anyway for a while too to just strengthen your intestines though not at such a large dose.

Speaking of which marshmallow root and slippery elm really help heal the villi and get rid of the inflammation too. They are pretty inexpensive.

Barring that of course there is also Pepto Bismol.

Bea

casnco Enthusiast

Ursa and Yolo: Thank you so much for your input. I have never heard of any of these remedies before. I will talk with my herbalist about them. Ursa you are right about pain killers. They also sap even more energy than the CC. And I just don't have any to spare. Thanks again. You guys are great!

YoloGx Rookie

Let me know if these remedies actually helps you. They really have for me. I was getting shooting D really bad from CC plus getting ill after etc.

The more people that try these remedies the more certain we can be if they work or not for people who have celiac in general. I hate it when the powers that be say there is nothing we can do but wait it out. At least in my case that ain't true!

Bea

katebuggie28 Apprentice

Pepto didn't work for me. I heard that Maloxx works, but I haven't tried it. I use peppermint tea, and it helps out a lot. Good luck.

casnco Enthusiast
Let me know if these remedies actually helps you. They really have for me. I was getting shooting D really bad from CC plus getting ill after etc.

The more people that try these remedies the more certain we can be if they work or not for people who have celiac in general. I hate it when the powers that be say there is nothing we can do but wait it out. At least in my case that ain't true!

Bea

In the emergency room they gave me Maloxx. I never gave much thought to taking an antacid. I gave all the credit to the demerol. Guess I will need to rethink the antacid. And maybe look at my food intake that might exacerbate the CC with the acid issue. Thanks Bea.


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AliB Enthusiast

I got CC'd the other day and I had been doing so well.

I made some cookies with oats, which I usually seem to be ok with but it was a new pack and I think they must have been contaminated. I only had half a cookie but by the time I went to bed my heart was fit to burst out of my chest it was pounding so hard and over the next day or so I could feel it working its way through the system - my guts creaking and groaning like an old door.

My restless legs came back with a vengeance and were bouncing all over the place uncontrollably and I had such a case of the 'jitters' I was like a pig in a box! I didn't have a clue what to do so I just had to put up with it until it subsided. I didn't sleep a wink all that first night and was up at 4am emailing Terry Leahy at Tescos demanding more gluten-free food choice!

I so hope it doesn't happen again but I might try some of your ideas if it does. Anything not to have to go through that again - and they say I'm not Celiac???!!!! As far as I am concerned, anyone who shows any antibodies, however small, is Celiac. Anyone who displays an obvious reaction to gluten is Celiac, and I defy the 'experts' to prove otherwise!

katebuggie28 Apprentice
I got CC'd the other day and I had been doing so well.

I made some cookies with oats, which I usually seem to be ok with but it was a new pack and I think they must have been contaminated. I only had half a cookie but by the time I went to bed my heart was fit to burst out of my chest it was pounding so hard and over the next day or so I could feel it working its way through the system - my guts creaking and groaning like an old door.

My restless legs came back with a vengeance and were bouncing all over the place uncontrollably and I had such a case of the 'jitters' I was like a pig in a box! I didn't have a clue what to do so I just had to put up with it until it subsided. I didn't sleep a wink all that first night and was up at 4am emailing Terry Leahy at Tescos demanding more gluten-free food choice!

I so hope it doesn't happen again but I might try some of your ideas if it does. Anything not to have to go through that again - and they say I'm not Celiac???!!!! As far as I am concerned, anyone who shows any antibodies, however small, is Celiac. Anyone who displays an obvious reaction to gluten is Celiac, and I defy the 'experts' to prove otherwise!

Celiac causes RLS? Really? I have had it my whole life, and it has gotten worse. wow. I had no idea.

YoloGx Rookie
Celiac causes RLS? Really? I have had it my whole life, and it has gotten worse. wow. I had no idea.

It sure has for me!

So, is no one interested in taking those other more natural remedies I mentioned above? Honestly that is what worked the best for me though I have also taken some Pepto Bismol it wouldn't be (hasn't been) enough by itself.

The heavy duty (esp enterically coated if you can find it) acidophilus (which is part of what they are expermenting with I hear at Stanford as a cure for this CC stuff), bromelain/papain and pancreatic enzymes. I also have taken Glutenzyme with this to good effect.

It was/is the kitchen sink remedy to put it all together but it was much better than getting sick. I didn't have the bromelain/papain at the time so ate pineapple and papaya instead and had the pancreatin. Then went to the store and found this Glutenzyme--all of which I took a double dose given my fear of getting ill again.

Continuing with the fibronylitic enzymes (bromelain/papain with nattokinase or serrapeptidase on an empty stomach) seems to be really healing my villi--i.e., hugely speeding up the process.

By the way AliB--are you still taking the co-enzyme B's? Has that helped alleviate some of your nerve problems in general? i.e., the RLS and sleep difficulties etc.? I find it has improved my short term memory too.

Bea

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    • 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. 
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      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 
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