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Sore, Sad, And Sick Of Getting Sick!


8Curvey8

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8Curvey8 Rookie

I have been gluten free for 3 years now and have had the best quality of life ever, until this past year... I got 2 stomach flus in the Spring that seemed to damage my intestinal track - has this happened to anyone before?

Slowly recovering I got glutened (sushi cc) and was again sick for another good 3 months of recovery. I was finally on track this fall, but got gluten'd at New YEars (sushi cc again).

My sweet husband got me some gluten free treats from a bakery that had CC and am back sick again on day 3 of recovery. I've officially decided to not eat anything I have not made myself anymore.

I have my parents watching my child all the time it seems, and I'm struggling through each day trying to run my business and take care of my family and home. It hurts that I need so much help taking care of my own child.

The fear of getting sick is also taking over my life as I have been sick, more than well, this past year. I don't even feel like eating anymore and no inspiration or energy to cook something.

Please tell me this is normal and will get better.


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YoloGx Rookie

I have been gluten free for 3 years now and have had the best quality of life ever, until this past year... I got 2 stomach flus in the Spring that seemed to damage my intestinal track - has this happened to anyone before?

Slowly recovering I got glutened (sushi cc) and was again sick for another good 3 months of recovery. I was finally on track this fall, but got gluten'd at New YEars (sushi cc again).

My sweet husband got me some gluten free treats from a bakery that had CC and am back sick again on day 3 of recovery. I've officially decided to not eat anything I have not made myself anymore.

I have my parents watching my child all the time it seems, and I'm struggling through each day trying to run my business and take care of my family and home. It hurts that I need so much help taking care of my own child.

The fear of getting sick is also taking over my life as I have been sick, more than well, this past year. I don't even feel like eating anymore and no inspiration or energy to cook something.

Please tell me this is normal and will get better.

Hi Curvey,

I can really feel the pain of this. Have had my own difficulties this Fall after working too hard and getting exhausted. I am totally with you on not eating out. I take my food with me everywhere. It is just food after all; just tell whomever you are too sensitive for it to be worth the chance of getting ill.

The thing is to look at why you have gotten so sensitive. I suggest going back to square one and baby your digestive system. Thus go back to no grains at all for a while, no sugars and eat a basic cave man like diet. It is very healing of the gut.

I also think taking some healing herbs from time to time might help -- though of course they aren't right for everyone. But many are helped by marshmallow root for instance. You also might look into taking basic plant digestive enzymes. I have found enterically coated acidophilus to be a great help. As is making my own 24 hour fermented yogurt (I am not allergic to casein, but do have a problem with lactose--the long fermentation of the yogurt gets rid of the lactose).

Again, try eating lots of vegetables--they really help. If your gut is too sensitive for raw veggies, steam them. Also consider blending them now and then so you get the benefits of the uncooked enzymes.

I have also found that taking olive leaf tea and/or extract capsules regularly (make sure of course they are gluten free!!, i.e., no alcohol extraction) is really helping me to restore myself. Daily use Olive leaf counteracts bad bacteria, viruses and fungi that many other things miss. Initially you might get a Herxheimer effect where you feel worse after the first 2 or 3 days, but that is a sign its working. Continue and I am betting soon you will feel way better than you have in months. And of course, drink lots of water!

Bea

rueyn Apprentice

I have been gluten free for 3 years now and have had the best quality of life ever, until this past year... I got 2 stomach flus in the Spring that seemed to damage my intestinal track - has this happened to anyone before?

Slowly recovering I got glutened (sushi cc) and was again sick for another good 3 months of recovery. I was finally on track this fall, but got gluten'd at New YEars (sushi cc again).

My sweet husband got me some gluten free treats from a bakery that had CC and am back sick again on day 3 of recovery. I've officially decided to not eat anything I have not made myself anymore.

I have my parents watching my child all the time it seems, and I'm struggling through each day trying to run my business and take care of my family and home. It hurts that I need so much help taking care of my own child.

The fear of getting sick is also taking over my life as I have been sick, more than well, this past year. I don't even feel like eating anymore and no inspiration or energy to cook something.

Please tell me this is normal and will get better.

Just wanted to offer a possibility for you to look into...

Small intestine bacterial infections (SIBO). My husband has had this before (once was from a stomach flu and once was from taking a round of antibiotics for a sinus infection). If you're not familiar with SIBO, Open Original Shared Link.

It can cause symptoms similar to Celiac (bloating, diarrhea, nausea, et cetera) and makes your stomach super-sensitive. They test for SIBO through a simple breath test, and you have to go on a course of special antibiotics to fix it.

8Curvey8 Rookie

Wow, thank you both so much! I have made a dr.'s appointment with my Natureopath this week, but maybe I should see my GP too for the SIBO - that could be it too! It is so hard to diagnose and differentiate between symptoms from Celiac or something else.

Just wanted to offer a possibility for you to look into...

Small intestine bacterial infections (SIBO). My husband has had this before (once was from a stomach flu and once was from taking a round of antibiotics for a sinus infection). If you're not familiar with SIBO, Open Original Shared Link.

It can cause symptoms similar to Celiac (bloating, diarrhea, nausea, et cetera) and makes your stomach super-sensitive. They test for SIBO through a simple breath test, and you have to go on a course of special antibiotics to fix it.

Karena Newbie

Wow, thank you both so much! I have made a dr.'s appointment with my Natureopath this week, but maybe I should see my GP too for the SIBO - that could be it too! It is so hard to diagnose and differentiate between symptoms from Celiac or something else.

I was diagnosed with SIBO and have had the course of antibiotics for treatment. I still have issues from time to time. It's a process of keeping the gut bacteria balanced and balancing soluble and unsoluble fiber in my diet. I also started taking VSL #3, a probiotic, that is sent refrigerated and been tested to deal with SIBO. I have seen a marked difference. Take one day at a time and de-stress in whatever way is best for you. Karena

YoloGx Rookie

Wow, thank you both so much! I have made a dr.'s appointment with my Natureopath this week, but maybe I should see my GP too for the SIBO - that could be it too! It is so hard to diagnose and differentiate between symptoms from Celiac or something else.

Just make sure if you go to the MD to make sure they do a culture. I would not be too quick to take antibiotics--they can mess you up, esp. if they are too strong (like what happened to me this fall--the antibiotic was worse than the ear infection and messed up my gut flora awfully).

No matter what I agree its good to get checked out esp. if something keeps hanging on and other remedies don't work.

Bea

8Curvey8 Rookie

I agree - I am on probiotics already and will try that Marshmallow root for sure ;) I heard slippery elm was good too, but I think it also makes you go to the bathroom? Maybe not good right now? I don't ever take antibiotics and I see a Natureopath, I think they won't prescribe that either, possibly some kind of alternative ~ I'm seeing her Thursday. Getting tested is the best start and this may be the bases of my problems that is weakening me and makes complete sense.

I can see why killing all your bacteria with antibiotics then replenishing only good bacteria may be the best answer though, which I am open too. I love all your feedback and time and care ~ much appreciated!!! Finding this forum has been making me feel like I'm not the only celiac out there...


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ravenwoodglass Mentor

I agree - I am on probiotics already and will try that Marshmallow root for sure ;) I heard slippery elm was good too, but I think it also makes you go to the bathroom? Maybe not good right now? I don't ever take antibiotics and I see a Natureopath, I think they won't prescribe that either, possibly some kind of alternative ~ I'm seeing her Thursday. Getting tested is the best start and this may be the bases of my problems that is weakening me and makes complete sense.

I can see why killing all your bacteria with antibiotics then replenishing only good bacteria may be the best answer though, which I am open too. I love all your feedback and time and care ~ much appreciated!!! Finding this forum has been making me feel like I'm not the only celiac out there...

You should also see your regular doctor and get stool tests done. You may have had more than just a stomach flu. If you had or have something like salmonella you may need an antibiotic to clear it up. I had salmonella once for over a month of misery and although my doctor insisted it was just my IBS getting worse after she finally did the stool tests I got a big apology and a script for antibiotics that cleared it up very quickly. If you make sure you consume some yogurt or other probiotics while you are taking the antibiotic it will prevent the die off of the good bacteria.

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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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