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New Cd Diagnoses....need Help


lauradawn

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lauradawn Explorer

Hi,

My name is Laura, and I just found out that I have Celiac through the blood test results. I am suposed to see a GI specialist. Should I look for a specialist for Celiacs?.......

Also, I am just trying to learn the secrets of the diet. I have been on it for almost a week, and am already starting to see some changes. Im a little overwhelmed right now, but just tyring to get a grip on everything. Any comments that might help would be greatly appreciated.

A couple questions that linger for me right now:

Who should I see for a Dr?

How young can a child be tested for the same disease? I am concered about my 2 year old twins.

How serious is cross contamination?


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Newbie Rookie

Hey Laura!

Welcome to the board :rolleyes: . From my experience, my family doctor sent me to a GI who deals with all types of stomach problems... and she discovered the celiac. So I'm not sure if you want to go to a specialist who only deals with celiac disease... You probably won't find many who just deal with celiac disease... If the blood tests already confirmed the disease, I would expect your GI to detect damage to your instestine when he/she performs an endoscopy. In my case, my GI deals with lots of other problems as well, and she diagnosed the celiac right off the bat with much accuracy.

When you're first learning about what you can and can't have, it will feel like a lot of information... that's because it is. But you'll pick up more and more as you read. Also, these message boards are amazing. You'll find very helpful people who can give advice, and also, they're hear to simply listen when you need to vent.

Cross contamination, as basically everyone on this board will tell you, is a very important concern. When I was first diagnosed, I asked the same thing. But with time, and some accidents, I've learned that even a crumb does damage. And I'm not sure what you feel after you eat something with gluten, but even a crumb of bread makes me ill for days. Nonetheless, whether or not you feel sick, if you have celiac and eat something with gluten, damage to your instestine will occur. So don't mix utensils from jars and butter, etc. onto your gluten-free food after others have used it on their non gluten-free bread. Wipe up your counters and be on the lookout for any ways that gluten can get into your food... for example when baking non gluten-free food, watch out for flour in the air settling onto your food and your counters etc. :unsure:

I'm pretty sure that 2 year olds can get tested for celiac. You may want to double check, but from what I've read on the boards, many people test their children.

Here is a helpful link to some gluten free foods... If you need anything, please feel free to ask. We're more than happy to help! :)

Open Original Shared Link

God bless,

Newbie

Guest aramgard

Hey Laura, Welcome. About cross contamination. I usually don't eat out much, but on Wednesday, my husband took me for lunch at a place where we often eat breakfast. I had plain burger, cottage cheese and tomatoes and I got sick about 15 hours later from cross contamination of the grill, which was used for heating up buns. Believe me it is a problem. So be very careful about where you eat out and feel better with your new diet. Shirley

mannabbe Newbie

Hi Laura,

Are there any celiac support groups in your area? That's be the best way to find a really great doc, and to get the best help for your children. Most doctors, in my experience, are pretty clueless - so you'll save time and heart ache by getting a recommendation. I'm really really happy for you that you've been diagnosed! I was diagnosed when my little girl was 4 - how wonderful that you will be able to share the best years of your life with your children. My daughter is now 7 and has been gluten-free for 2 years.

Good luck,

Laurie

wclemens Newbie

Hi Laura, welcome to the board. My grandson was diagnosed by Enterolab.com at a month or so of age, after becoming violently ill when drinking cow's milk formula. This stool sample can be ordered online, returned by mail, and can also diagnose whether your child carries the gene for Celiac, is allergic to milk and dairy, along with several other options.

When you go to that website you'll see the tests they offer. Best wishes! Welda

lovegrov Collaborator

If you're going to this GI for further celiac testing you need to continue eating gluten for accurate results.

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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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