artistsl

@juliac What you describe sounds very much like Eosinophilic colitis (EC) and Eosinophilic Esophagitis (EOE). It can only be diagnosed via biopsy. You may consider finding a GI doc who specializes in Eosinophilic gastrointestinal disorders, if you haven’t done so already.

Sorry, you said it feels like the sensation of a walnut caught in your throat. I thought you indicated this sensation took place after eating a walnut. Either way, nuts, eggs, dairy, wheat and shellfish are very common triggers for EOE. But environmental allergies also play a big role. Worth looking into.

You very likely have a different autoimmune condition called EOE and from what you wrote it would seem that wheat and nuts are a major trigger. Highly recommend you see an allergist and GI specialist experienced with EOE as soon as possible. They will likely start with an endoscopy, take several biopsies and meanwhile you will want to get tested for environmental allergies. Some have found that foods associated with OAS can trigger these symptoms. Good luck!

Update: We haven’t looked into FMT yet. Currently the GI and allergy team are looking for an autoimmune condition also aggravated by gluten called EOE which can occur anywhere throughout the digestive tract. Our next steps are a two week unrestricted diet followed by endoscopy and biopsy.

Did they perform biopsies to look for EOE? It can occur anywhere in the digestive tract. It’s an allergy response that occurs in your digestive tract. Blood work can be negative, but biopsy can be positive. You mentioned environmental allergies so that got me thinking.

I hope they did biopsies to look for EOE. It can occur anywhere in the digestive tract, not limited to the esophagus.

I feel like it helps with anxiety. He's had antibiotic exposure while in the womb, and four occasions prior to age four. I believe there is definitely something to it. Have considered and will likely try an at home FMT.

He is taking Garden of Life for Kids which contains 14 live cultures. I tried giving him coconut kefir, but that backfired on me due to the unknown coconut sensitivity.

We use pure cherry juice with our snow cone machine. Makes for a nice dessert after dinner.

Garden of Life brand Dr. Formulated Organic Fiber. It's certified gluten free. Also free of psyllium husk, dairy and soy. Also found that just simply increasing fiber intake works wonders. Perhaps try skipping a protein for at least one meal and fill up on veggies and fruits.

Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note: a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten. Rye Barley Spelt Wheat Oats Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet. After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other. P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back.

I've never used GFWD. I assume that is a website called gluten free watchdog? I've heard others mention it. I do have pictures. I will look them up. Thanks

I reached out to Divina to inquire as to whether their olives contain gluten. The customer service representative replied informing that the blue cheese stuffed olives contain breadcrumbs therefore contain gluten. 1) The Divina brand blue cheese stuffed olive label does not list gluten as an ingredient. 2) All Divina brand olive labels have an allergen disclaimer specifying that the olives were manufactured in a facility that handles nuts. However, it is unclear as to whether the blue cheese stuffed olives are produced alongside all other Divina olive products in which case the allergen statement fails to disclose the fact that these products are produced in a facility that uses gluten.

I never knew steroids made it worse. Thank you for posting this. I too have the rash on my knuckles, but it's undiagnosed. The allergist prescribed steroid cream and it only seemed to make it worse so I stopped using the prescription. My intent is to do an eight week gluten challenge after the holidays, but after reading this original post I'm fearful that my rash will spread. Right now it's contained to my knuckles not to mention the other symptoms like throbbing joint pain, dizziness, fog, fatigue. The last time I was glutened I felt like I wanted to vomit, which I had never experienced before. Can symptoms worsen or spread each time you're exposed? Seriously hesitating to do this for eight weeks after reading this thread.

I have what I believe is or are hemorrhoids and my chronic joint pain seemed to come about at around the same time. These symptoms all came about immediately after the birth of my daughter. Because my son started experiencing major health concerns our family made a decision to trial a 100% gluten free diet. I'll be damned, my joint pain entirely disappeared. Then I noticed that this chronic that I had for 11 years went away. I no longer felt tired all the time. I no longer experienced boughts of dizziness. Here's what I recommend. Do an elimination diet and start with Paleo. If you're anything like me you may benefit from adding a non dairy kefir to your daily diet. I feel more like a normal person if I avoid gluten, but I feel like a million bucks when I drink my daily kefir. Look for a brand called Forager Project. It contains ten live active probiotic cultures. I stick to a simple whole food diet. I've eliminated all grains, soy, dairy, nightshades and drastically reduced iodine intake. Best of luck on your journey towards healing!