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Thought I Was A Little More Prepared Than This...


jitters

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jitters Apprentice

Okay. My mom has been gluten free for about 10 years now. So I'm not brand new to all this. In fact, I thought I would be a lot more prepared for this. Now I'm realizing I'm totally overwhelmed and scared. I have been gluten free (well, okay I admit I have been cheating more and more lately) for four years. My symptoms are almost non existant so its sometimes hard to stay away from gluten when it doesn't make me sick. I would almost rather it made me extremely ill so it would be easier to stay away from it.

So- I got the results back on my three year old daughter today:

Gluten Sensitivity Stool Test

Fecal Antigliadin IgA 30 (Normal Range <10 Units)

Cow's Milk Protein Sensitivity Stool Test

Fecal anti-casein (cow


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RiceGuy Collaborator

For the dairy, I've found nut milks are tremendously delicious. I really like them, and the nice part is they are easy to make, so you don't have to buy them. There are other sorts of milk too, such as rice, soy, etc. Dairy free cheeses are available, so check your local health food stores. One brand I know is Open Original Shared Link, but do watch the ingredients, as some products contain casein, and/or hidden MSG.

abigail Apprentice

you may ask to the doctor if a LActose FRee milk will also work for your kid.

good luck, and be strong!!

Abi

Nancym Enthusiast
you may ask to the doctor if a LActose FRee milk will also work for your kid.

good luck, and be strong!!

Abi

That won't help for a casein sensitivity. You have to avoid all dairy.

Nantzie Collaborator

Although I've seen much higher numbers, she's got about the same numbers as my kids did as far as gluten goes. They both showed a dramatic improvement in digestive issues AND behavior/mood issues on the gluten-free diet.

Nancy

jitters Apprentice
Although I've seen much higher numbers, she's got about the same numbers as my kids did as far as gluten goes. They both showed a dramatic improvement in digestive issues AND behavior/mood issues on the gluten-free diet.

Nancy

Thanks, thats what I was looking for. We've definitely had some mood issues lately, I'm really hoping the gluten free diet will help. It sure helps my mood!

shayesmom Rookie
My second question- how in the heck am I going to go dairy free with her? Cheese and milk is a food staple for her. In the back of my mind I always new that she had issues with dairy and gluten, but now I KNOW she does and I am responsible for keeping her healthy until she is old enough to understand this disease and make the right decisions regarding food.

The more and more I think about this, the more overwhelmed I am. I truly thought I was more prepared than this...

Anyone out there with children who are dairy and gluten free? Any tips for me?

My dd is gluten, dairy, soy and egg-free. We also severely restrict food colorings as there is a random reaction associated with them....but we haven't pinpointed which one.

There are a lot of good milk substitutes out there. We don't rely on just one kind, but rather, rotate them. For milk we use any of the following: rice milk, hemp milk, almond milk, hazelnut milk or Vance's Dari-free (potato). For recipes, I often will use coconut milk in lieu of milk or cream.

Cheese is a bit harder to replace because the alternative cheeses invariably contain casein. A while back, someone here posted some cashew cheese recipes. The recipe looked and sounded odd....but we've tried it and it's a very good cheese substitute. It makes a sliceable cheese or just a cheese sauce (a bit like Monterey in flavor). Although it doesn't hold up to heat for long and the texture isn't the same, the flavor is very good. My dd loves it on her pizza, tacos, etc..

Besides that, Enjoy Life makes a good allergen-free chocolate chip. Living Without magazine had a really good dairy/gluten/soy-free pudding recipe if you want an occasional treat.

In all honesty, the best place to look for recipes free of gluten and dairy would be on a paleo diet site. You also may have some luck if you look for raw food recipes or even vegan recipes. I've found that by combining the different techniques/substitutions on these sites that I can acheive a great amount of versatility. Most people don't notice that they are eating allergy-free over here.


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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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