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MEH999

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MEH999 Newbie

I have recently been diagnosed with Celiac Disease (by blood test) and I have a few questions. I was having heart burn pains and now since being on a glutin free diet they have gone away but now I am having lower abdominal pain. I was woundering if anyone has had the same symtoms. I think that my small intestine is just healing but I don't know. My dotor said that It would take about a month before the inflimation does down. Is this true or am I suffering from somthing elce?


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Ursa Major Collaborator

You probably need to eliminate dairy for at least a few months, as it will hinder healing. Soy could be the culprit as well.

JNBunnie1 Community Regular
I have recently been diagnosed with Celiac Disease (by blood test) and I have a few questions. I was having heart burn pains and now since being on a glutin free diet they have gone away but now I am having lower abdominal pain. I was woundering if anyone has had the same symtoms. I think that my small intestine is just healing but I don't know. My dotor said that It would take about a month before the inflimation does down. Is this true or am I suffering from somthing elce?

It's hard to be sure when you've just gone gluten free to know what to blame certain things on. It probably is best for you to eliminate dairy for about a month, then try again and see if you get that same pain. A lot of people are lactose intolerant for a time while healing.

RockHammer Rookie
It's hard to be sure when you've just gone gluten free to know what to blame certain things on. It probably is best for you to eliminate dairy for about a month, then try again and see if you get that same pain. A lot of people are lactose intolerant for a time while healing.

After years of abuse, your whole GI may be very unhappy. You might need to also eliminate anything hard to digest, like milk, corn, most uncooked fruits and veggies, and a long list of other things. Check in the book "The Gluten Free Bible. Against the Grain". It has a great deal of info on managing your gluten-free diet effort. The book by Green "Celiac Dx, the Hidden epedimic" (these titles may not be exact.) also might give you a lot of guidence.

After a few months, if you are still having problems, more extra measures may be necessary. This was the situation I had. After 6 months of a very strict gluten free diet, I was still having major problems. In my case, a part of the problem was the Prilosec I had been put on years ago for GERD. Try reading Green's chapter about when early measures fail. Six months later, a year after diagnosis, I am now starting to make some progress.

I had typical symptoms of celiac all my memorable life. Now at the age of 56, it will take years of healing before I will be back on my feet. [i was fired by the great state of Florida after nearly 25 year of distinguished service. That was just over a year ago.] My case was missed by some of the largest medical facilities in the Southeast, Univ of Alabama Birmingham, Univ of Miami, Univ of Florida Shands, Mayo Clinic Jacksonville, among others. Misdiagnosis ran from Migraine headache, GERD or acid reflux, Irratable bowel, Hepatitus, even pheochrocytoma. I am the poster child of what can happen with undiagnosed Celiac goes untreated.

One more bit of advice. When you go to the store, take a magnifying glass in addition to your Gluten free bible or lists of what to look out for, you know; on the list of ingredients.

I don't know how long your case was misdiagnosed. Whatever the case, we both have a long road ahead. Good luck. Let me know how you do.

Rock Hammer

YoloGx Rookie

Just wanted to add some herbal etc. remedies for inflammation. As I have often said, marshmallow root caps or powder--and/or slippery elm caps or boil it up. I have listed how elsewhere on the board. They both are very soothing and healing of inflammation in the gut.

Taking some enzymes with food (bromelain/papain and pancreatin) makes a huge difference--helps one digest food better plus it takes down some of the inflammation.

Taking systemic enzymes on an empty stomach will help reduce scar tissue as well as decrease inflammation; again bromelain/papain caps with either nattokinase or serrapeptidase. I discuss this more at length elsewhere in older posts--plus a variety of herbs that helps one's liver deal with the toxicity inevitable from leaky gut brought on by the damaged villi. Plus some good B vitamins, vitamin D, calcium, magnesium, omega 3's etc. However I just thought I would give you a quick heads up.

Just make sure whatever supplements you take that they are gluten free.

Bea

Welda Johnson Newbie

Hi,

I just wanted to offer a few words of encouragement, since I can feel how frustrated and sad you probably are at learning you have Celiac. I had Asthma from the age of 8 and never realized that it became worse after I ingested certain foods. That is until I started eliminating certain foods in my thirties and seeing that I would improve. I finally learned about six years ago that the disease is called Celiac and that I have it. Now at age 63 I have been able to get on a strict vegan diet, avoiding all grains, all milk & dairy, egg whites, yeast, and meat. At five feet tall I now weigh 100 pounds, and by using a breathing machine and minimal medication, I am breathing well, so all those years of suffering are but a dim memory, as is the weight control issue with which I had struggled for so long. Guess what? I sleep 8-10 hours a night and walk the treadmill each morning from 3-6 miles. Life is good.

It took a long time to be able to diagnose each and every food or additive which affected my life, but the effort was worth it, and along the way I was able to read a lot of books about healthy nutrition, so that was good too. I wish you well in your quest for good health. Keep on going on! Welda

kevsmom Contributor

Don't forget to check your medications and beauty products for gluten. Also, watch out for cross contamination. I hope you are feeling better soon. :)


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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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