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Ahhh! Diagnosed Celiac In June. Now...how Do I Know Hwich One?


tka

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tka Apprentice

Feeling pretty helpless/hopeless today. I was diagnosed with celiac disease in June. Then had to have an ultrasound because my liver levels were also high. That came back as a possible fatty liver. But they also found lots of gallstones. How do I tell the difference between what's a celiac symptom/possible gluten issue and what's being caused by the food I eat and gallstones/gallbladder flaring up? I have a whole new set of foods I have to try to figure out now. When I looked up the symptoms for the gallstones, several of them were what I thought were related to the celiac. At least now I know why I have the burning pain in my stomach so often after eating. Maybe I'm getting bet than I thought on the gluten free diet. I thought I was still glutening myself somehow and couldn't figure it all out. I still have the fatigue, but some day that's better now. I am encouraged by the fact that the fatigue is not everyday, all day though. Has anybody else had both of these together? Any suggestions? I know I'll be ok, but for a little while I was pretty down. Between the two lists, I was thinking, "Where is it going to stop? Will I be able to eat anything?" Sorry, I'm just venting a bit I guess.


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mamaw Community Regular

Many of us  have  had  gallbladder surgery before  or  after  a celiac  dx's..... Do  they  want  to  remove  your gallbladder?

Healing  the  intestinal  tract  from  celiac  can  take  months  to  a few  years...so be  patient & try   clean  eating  , no  processed  foods,  going  dairy free  may help(  that  is also broken  down  at the  tips  of the  villi) no  nightshades,  no  junk  food  unless  you get to  craving  something.. Plain basic  food... corn  can  also  be  a problem  for many  & also  with  gallbladder issues....

I  would  add  digestive  enzymes, and  probiotics to help  digest  and  break  down  proteins, sugars,  &  so on.... 

tka Apprentice

Thanks. I know it will take time. I just didn't expect the gallbladder stuff on top of the celiac so soon. I have been doing pretty well with the gluten free diet I think. At least now with the gallbladder diagnosis that makes more sense as I couldn't figure out why I was still having tummy problems regularly. I thought I was doing well on the diet and didn't understand where the contamination was coming from...I almost thought my husband was doing something to cc thing:)...not really, he's been pretty good. I think he didn't understand how serious cross-contamination could be in the beginning, but I had him read some things on this forum and he has been much better.

Doctor wants to see if I can control the gallbladder stuff with my diet, but says if I have a major outbreak he will recommend removal. He's going to monitor for now. Were your symptoms for gallstones different than the celiac? Is there a way to tell them apart? I'm assuming the gallbladder is what causes the burning pain in my stomach area right under my ribs a little to the right side, followed by gas. It can happen during a meal or right after, but I can also get it two to three ours later. It gets worse then. Diarrhea can come later too. It can be accompanied by belching and acid reflux. I can also have most of those symptoms with a glutening I think, but the glutening seems to be magnified...more gas, extreme diarrhea, bloating and weight gain, achy joints and muscles, headache, and exhaustion...and is more prolonged. Does that make sense? I should buy stock in GasX and Pepcid Complete and Imodium!

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    • 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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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