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Glutened Or Colitis?


sandsurfgirl

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sandsurfgirl Collaborator

I had very bad colitis a few weeks ago and ended up hospitalized for it. It was so painful I went to the ER and they put me in the hospital for 2 days on massive antibiotics even though they weren't really sure if it was bacterial. My CT scan showed massive swelling on my left side of my colon. All my blood and urine labs were normal. The antibiotics helped though so I figured it was bacterial. It went away for the past couple of weeks.

I got pretty bad constipation the past couple of days. Cleared it up with stewed prunes last night before bed. But today I'm bloated and have that lower gut pain. I'm really uncomfortably bloated right now. I'm wondering if I have C again.

I did have some Trader Joe's chocolate macaroon cookie thingies with ganache yesterday. There are no gluten ingredients listed on the label but it is done with shared lines. But I thought Trader Joe's was very careful with CC so I didn't worry about it. A couple of hours later I had my usual anxiety and feeling like crawling out of my skin that I get when glutened.

Now I'm just not sure what to do. Wait it out and figure it's a glutening? Is there anything I can do if it's colitis? Should I go back to my doctor? I hate going to the doc for gut stuff because usually they shrug their shoulders. My good doctor changed jobs and I have a not so great one now. I need to find a new one, but in the meantime I'm stuck with him.

If any of you have colitis I would love any advice you have. I'm supposed to get a colonoscopy but now the insurance is reviewing it. Jerks. They might deny it and then I'll have to argue with them.


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SarahJimMarcy Apprentice

I just went through something similar -- dehydrated and a couple bags of fluids -- and Urgent Care said it was colitis. Though I had the colonoscopy, the GI hasn't really said if it's acute or chronic or just an inflammation or what. I wish I had some advise for you but all I can do is commiserate. I am getting the same set of non answers. It's very frustrating, isn't it?

sandsurfgirl Collaborator

I just went through something similar -- dehydrated and a couple bags of fluids -- and Urgent Care said it was colitis. Though I had the colonoscopy, the GI hasn't really said if it's acute or chronic or just an inflammation or what. I wish I had some advise for you but all I can do is commiserate. I am getting the same set of non answers. It's very frustrating, isn't it?

It sure is frustrating! They gave me two types of IV antibiotics for 2 days in the hospital and they helped a lot until now. But my blood tests were all negative for infection so what does that mean? The doctors had no explanation, not the ER doc, the hospital doc or my doc. My white blood cell count was normal. They cultured my stool and it was all negative for anything alarming. They took tests for C Diff bacteria 3 times. Negative, yet antibiotics helped. Go figure.

I just wish I could tell if I was glutened or if it was colitis again. I read about colitis and it said diarrhea not constipation but I've had constipation. Even after going this morning I was stopped up again today and had to eat more stewed prunes. I'm afraid to take a laxative because if it is colitis then I think that might irritate it.

Sorry for the graphic poop talk. You people are the only ones I can have in depth poop conversations with! Thanks guys. LOL

YoloGx Rookie

"I did have some Trader Joe's chocolate macaroon cookie thingies with ganache yesterday. There are no gluten ingredients listed on the label but it is done with shared lines. But I thought Trader Joe's was very careful with CC so I didn't worry about it. A couple of hours later I had my usual anxiety and feeling like crawling out of my skin that I get when glutened. "

I hate to tell you, but its my belief you did get glutened by the cookies etc. I used to think it was OK to eat things made by TJ's on shared lines with wheat, but both my bf and myself have gotten badly glutened from cross contamination ('CC) eating such items.

My best advice is to only eat things not made on shared lines or in a facility that also processes wheat.

If you end up being really sensitive (as I am) you many need to make most everything from scratch, especially at first. Think of it this way, it costs far less and is usually a lot better for you.

Am also wondering why you were eating chocolate macaroon cookies right after having been in the hospital for severe intestinal difficulties... Might want to wait a bit to heal more before introducing sugary chocolatey items.

Meanwhile, consider taking some pro-biotics and eating things like papaya and pineapple maybe with some plain yogurt to calm things down, assuming you are not allergic to them. Vegetable smoothies made in your blender might also be a good idea... I like to make them combining chopped up celery with parsley and lettuce. Further, home made chicken/ vegetable/brown rice soup is very healing.

Bea

YoloGx Rookie

"I did have some Trader Joe's chocolate macaroon cookie thingies with ganache yesterday. There are no gluten ingredients listed on the label but it is done with shared lines. But I thought Trader Joe's was very careful with CC so I didn't worry about it. A couple of hours later I had my usual anxiety and feeling like crawling out of my skin that I get when glutened. "

I hate to tell you, but its my belief you did get glutened by the cookies etc. I used to think it was OK to eat things made by TJ's on shared lines with wheat, but both my bf and myself have gotten badly glutened from cross contamination ('CC) eating such items.

My best advice is to only eat things not made on shared lines or even in a facility that also processes wheat.

If you end up being really sensitive (as I am) you many need to make most everything from scratch, especially at first. Think of it this way, it costs far less and is usually a lot better for you.

Am also wondering why you were eating chocolate macaroon cookies right after having been in the hospital for severe intestinal difficulties... Might want to wait a bit to heal more before introducing sugary chocolatey items. One thing to watch out for too are Glutino cookies. Both my bf and I reacted to them. It didn't last as long as a regular glutening, however it was downright unpleasant as well as being unexpected. In Canada and Europe they sell baked goods made from de-glutenized wheat. For many celiacs its OK; however for other it just plainly is not. Some of us need a much lower count than 20 PPM of gluten that is the accepted norm.

Meanwhile, consider taking some pro-biotics and eating things like papaya and pineapple with a bit of plain yogurt to calm things down, assuming you are not allergic to them. Vegetable smoothies made in your blender might also be a good idea... As is home made chicken, vegetable, brown rice soup.

Bea

sandsurfgirl Collaborator

"I did have some Trader Joe's chocolate macaroon cookie thingies with ganache yesterday. There are no gluten ingredients listed on the label but it is done with shared lines. But I thought Trader Joe's was very careful with CC so I didn't worry about it. A couple of hours later I had my usual anxiety and feeling like crawling out of my skin that I get when glutened. "

I hate to tell you, but its my belief you did get glutened by the cookies etc. I used to think it was OK to eat things made by TJ's on shared lines with wheat, but both my bf and myself have gotten badly glutened from cross contamination ('CC) eating such items.

My best advice is to only eat things not made on shared lines or even in a facility that also processes wheat.

If you end up being really sensitive (as I am) you many need to make most everything from scratch, especially at first. Think of it this way, it costs far less and is usually a lot better for you.

Am also wondering why you were eating chocolate macaroon cookies right after having been in the hospital for severe intestinal difficulties... Might want to wait a bit to heal more before introducing sugary chocolatey items. One thing to watch out for too are Glutino cookies. Both my bf and I reacted to them. It didn't last as long as a regular glutening, however it was downright unpleasant as well as being unexpected. In Canada and Europe they sell baked goods made from de-glutenized wheat. For many celiacs its OK; however for other it just plainly is not. Some of us need a much lower count than 20 PPM of gluten that is the accepted norm.

Meanwhile, consider taking some pro-biotics and eating things like papaya and pineapple with a bit of plain yogurt to calm things down, assuming you are not allergic to them. Vegetable smoothies made in your blender might also be a good idea... As is home made chicken, vegetable, brown rice soup.

Bea

Yeah I think I did get glutened. Darn those cookies were GOOD! Oh well. No more of those. I am very sensitive now, so it was probably crazy of me to try them. I even thought "Hmm maybe these are dangerous" and then I took a walk on the wild side.

I hope it is a glutening because that will go away soon. If it's colitis again then it might be ulcerative colitis or any of the other nasty forms of colitis and I do not want those!

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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. 
    • 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 
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