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Hey, Newbie Here! My Story... Tmi?


Sarah2008

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Sarah2008 Newbie

Hello everyone, if you haven't figured it out yet, my name is Sarah. I'm 21 (turning 22 on Saturday) and I have an 10 month old daughter. I just wanted to get this out, and since this seems to been the best Celiac forum out there, I figured this would be the place, people who understand what I've been going through. I do apoligize for being a pity queen, but I can't help it. ;)

My health as been rocky since the birth of my daughter back last June. The pregnancy and labor was a breeze, I should've known some bad karma was headed my way. Shortly after I gave birth, I developed a fissure... for those who haven't had the luck, it's like pushing out shards of glass during a BM. That fissure lasted until October 15th, I had a sphinterotomy and they found a huge abscess. They thought I was joking about the pain, the day before the surgery I spent 9 hours straight in the bath tub crying. The abscess was so bad I was nearly septic. So surgery was done, I feel much better, still some issues though. Anyways, the day before the surgery I got Diareah, but it went away until two days after surgery. When it came back I was positive that it was due to that abscess and didn't think twice. After a couple weeks with diareah I developed horrible stomach pains. At this point I had missed 5 months of my daughters smiles with the fissure, and now I was condemned the "the throne"?? I went to my general doctor. She ran a test for Celiac's which came up Negative. I then got a referral to my "tummy doc". She then ordered a more specific test for Celiac's which also came up Negative. After much arguement she backed down on the colonoscopy (my surgeon said he'd ring my neck if I did that, it would mess up the incision down there) and did an upper endoscopy instead. All this time I'm at home in fetal postion or in the bathroom. Dec 26, I got scoped and biopsied (boy I sure am sick of those) and go figure, positive for Celiac's.

I started the Gluten Free diet almost immediately after. That's a task on it's own, I knew of the diet from working for a dietician so it wasn't horribly hard, but at this point in time we are not financially stable, I was buying cheap processed foods so we had more money for our daughter. I had a few mishaps but until March 1st I was free of all symptoms. Then the D started again. I switched coffees. I had been drinking Folgers, and even though I thought it was gluten free, when I stopped I had 4 days of normalcy again. Then after that until now (just a few secs ago lol) I've had D and severe stomach pain again.

I just learned that some meats are injected with a "solution" and all though I'm not sure if they are gluten-free or not, I'm cutting them out, until I can buy Natural Meats (It's sad that we have to put chemicals and such in "fresh meats" now). It's been 3 days and still no relief. It almost seems like I'm sicker by the day. I don't get it, I have no idea where this gluten is coming from. I'm actually starting to get scared.. well terrified.. that something else could be wrong with me. I have a tummy doc appointment on the 24th of this month, that's the earliest I could get in (and I made this appointment back in Feb for a check up). I'm just scared.

But that's my rambling. Looking forward to talking with all of you!


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fedora Enthusiast

hi,

you are not alone with this. I am sorry. Clean out your house completely of wooden utensils, wooden chopping boards, cast iron, and nonstick pans, plastic colanders. Check all your beauty products-makeup, conditioner, moisterizer,lipstick. Browse through here and find the starter list...it's here somewhere. Find the names gluten can hide under. I have a couple of books that helped me uncover the hidden gluten..also natural flavors, vinegars. Some of my super sensitive friends do not eat any vinager at all or eggs from chickens that have been fed gluten(not me though). I avoid eating out now. I need to finish stabilizing first.

Sometimes people have stronger reactions after going gluten free, then eventually their reactions get weaker. good luck

curlyfries Contributor

Do you put milk in your coffee? You could have a problem with dairy. I was gluten free for a couple of months and doing pretty good when I suddenly started having problems again. Now I am off of dairy [actually, I think I've figured out that it's actually lactose] and starting to do better again. Also , I am now very sensitive to cross contamination and that didn't used to be the case.

YoloGx Rookie
hi,

you are not alone with this. I am sorry. Clean out your house completely of wooden utensils, wooden chopping boards, cast iron, and nonstick pans, plastic colanders. Check all your beauty products-makeup, conditioner, moisterizer,lipstick. Browse through here and find the starter list...it's here somewhere. Find the names gluten can hide under. I have a couple of books that helped me uncover the hidden gluten..also natural flavors, vinegars. Some of my super sensitive friends do not eat any vinager at all or eggs from chickens that have been fed gluten(not me though). I avoid eating out now. I need to finish stabilizing first.

Sometimes people have stronger reactions after going gluten free, then eventually their reactions get weaker. good luck

Good advice!

Just wanted to add I even got CC'd I think from my mother's old very gluteny cook book and electric egg beater.

Just hang in there. Things will get better. And consider taking gluten free marshmallow root or slippery elm caps to sooth and heal your innards.

mftnchn Explorer

Yes, you could have another sensitivity that has developed, many people here have had that happen. I agree about the dairy. Soy is another frequent one.

Beyond that, you may need to do an elimination diet to figure out what is going on. Search the forum here for info, but realize that a food sensitivity can be to anything and cause any symptom and varies from person to person.

One thing I did after going Gluten-free Casein-free, was to eliminate all grains for a week and then tested the main gluten-free ones I was using. Then I eliminated all legumes and tested soy and peanut which were the main ones I was eating all the time. Corn, soy and peanut was all problematic and have since been confirmed by other testing. I was planning to then test the nightshades but haven't. My allergist told me these three food groups are the major offenders. Of course then there is the seafood, nuts, and any other food!

It is wonderful that you have responsed to the gluten-free diet, just remember it will take 1-2 years to heal.

AliB Enthusiast

Oh Sarah, I see this so many times. People like yourself who get better for a while than start to go downhill again.

I am not sure that the problem is necessarily as straight-forward as being glutened or CC'd. There are an awful lot of people out there who are not just intolerant of gluten, but actually carbohydrates as a whole.

I found when I went gluten-free that I was still having problems with certain foods so I actually dropped not just gluten but dairy, and most carbs and sugars. I now concentrate on basic plain unprocessed meat, fish and poultry, fresh fruits and vegetables, a little honey and a few nuts and some good plain unsweetened probiotic yogurt (yogurt is usually ok as most of the lactose is broken down by the bacteria, but some cope with goats yogurt better than cows).

Dairy and sugar are problems because the enzymes needed to break them down are produced at the tips of the villi and when the gut is damaged due to the gluten, that is the first bit to go. Whereas the carbs in fruit and veg and honey are simple single molecule sugars, lactose in dairy and sucrose in sugar are double molecule, and grains and starches are multiple molecule, both types of which need to be broken down into single molecules before they can be utilised by the body. Under normal circumstances this would not be a problem but as the enzymes are lacking or even missing due to the gut damage in those who are gluten intolerant, our bodies can't cope with them and they then become food for 'bad' bacteria which triggers fermentation and gas and inflammation.

When people drop gluten, the first thing they do is look around for lots of other carbs to replace it with. Whilst they get better for a short while, eventually those other carbs also become a problem as the intolerance spreads. I found by cutting straight to the chase by removing all those from my diet, my gut is healing a lot faster and after just 2 months I can now tolerate a few more foods, an odd carb treat here and there and eggs, which I couldn't cope with a few weeks ago.

The more we eat the foods that are antagonising our digestive system, the longer it will take to heal. Also, by removing the food for the bad bacteria they will die back and we can get them under control too, and they will no longer be contributing to our health problems. I am following the Specific Carbohydrate Diet which has had terrific success with those who have stomach and bowel problems.

Some say that it is more expensive, but I don't think so. Instead of buying lots of carb foods I am spending the money on good protein, fruit and vegetables. Protein and good fats fill you up and keep the blood sugar level so you don't experience the yo-yo effect as the blood sugar swings wildly from one extreme to another that people get when they eat a lot of carbs. My body functions much better on less food too. I think my grocery bill has actually decreased as I am more selective about the amount and type of food I buy rather than just stocking up on the garbage! Carbs are very addictive, the more we eat, the more we want. How many people can stop at just one cookie???

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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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