I'm from the S.F. Bay Area, and I totally understand your need for pizza and fun foods to enjoy with friends. Gluten-free pizza, however, is fairly easy to come by here in California now. Is not available at restaurants where you live now? Do you have any BJ's Restaurants there? It's a chain that offers a gluten-free menu and a fantastic gluten-free pizza. If not, please check it out when you come home to California--they even serve gluten-free beer (Redbridge)!
We also have a very active gluten-free Meetup group in Bay Area. If you're ever in the area, check us out....
This type of situation always upsets me! I have a nephew and niece whose pediatrician believes the same thing, and all the while they are suffering from numerous symptoms of celiac. My mother, uncle, son, daughter, and I all have celiac, but the pediatrician my brother takes his children to appears to be completely ignorant about celiac. I would suggest that your son change pediatricians--he/she obviously does NOT understand very much about celiac disease. You are an admirable advocate for your grandson.
In the beginning--and especially if there's a lot of healing to do--it's best to avoid processed foods. Natural foods are the way to go so that you can be sure that you aren't getting any contamination. The American way of life, unfortunately, has been based on processed food for such a long time, people sometimes have a difficult time adjusting to this change, but eventually you won't even miss processed foods. Many of us look at them now and practically gag--they just don't appeal to us. Also, to help heal, many celiac experts recommend L-Glutamine, which heals the gut.
I would venture to guess that your child's doctor is not knowledgeable enough to determine whether or not your son's biopsy shows signs of villi destruction or not. Even trained pathologists can find reading biopsies difficult. Also, sometimes the scope can't reach the area that is damaged in the small intestine. Would your doctor be willing to send the biopsy to a trained pathologist or gastroenterologist for a second opinion? Since you have gluten sensitivity, it would seem logical for the doctor to suggest a gluten-free diet for your son to see if the symptoms resolve themselves. If you don't get direct, logical answers from her, perhaps you need to seek another medical opinion elsewhere.
Your story could have been written by many of us here on the Forum. (All those on the Forum who felt like dog poo, please raise your hands!) And, yes, the symptoms can wax and wane throughout one's lifetime. Gluten acts like a neurotoxin on both people with celiac and those who are simply sensitive (usually because they have leaky gut), which is why memory can be affected in so many of us. Also, it's not uncommon to be ultra-sensitive to gluten after removing it from your diet and then adding it back in. Sometimes that's the determining factor for those who have been on the fence about going on a permanent gluten-free diet--their socks got blown off by the symptoms when they resumed eating gluten (yep, "dog poo syndrome").
However, in addition to symptoms of celiac, I also wonder if you might have Hashimoto's thyroiditis. The memory problems, fatigue, muscle aches, etc., are all indicative of a thyroid condition, which is common with people who have celiac. Please have your doctor test you for it. Also, you might ask for iron and ferritin tests--whenever my anemia gets really bad, I can't type at all because I make too many typos.
With regard to your rash, I notice that you described it as starting as a fever blister, which is a form of the Herpes Virus. The skin condition that many of us celiacs get is called Dermatitis Herpetiformis because it is rash that is herpes-like (itches, stings, and burns). You may, in fact, have this condition....or perhaps you have a zinc deficiency from celiac that is causing the bumps. Whatever the condition is, I suspect that a gluten-free diet might just help clear it up!
Please read the following article that is available on celiac.com (look at the left column and you'll see something like articles and research/other diseases, and then scroll down to Schizophrenia/Other Neurological Diseases).
In this article, it states VERY CLEARLY what it is in gluten (a peptide that is also found in LSD) that affects some people so that they can become psychotic (hallucinatory), depressed, etc., when they eat gluten. They don't even need to have celiac for this to occur. Please print this article out and give it to your sister. There is solid evidence in the studies upon which this article is based.
My own son became terribly depressed and suicidal when he was 15-16, and luckily I found out that we both had celiac disease shortly thereafter. He's been fine ever since switching to a gluten-free diet.
That gastro gave you the WRONG advice, so I'm glad you're willing to overlook it. According to leading celiac expert Dr. Alessio Fasano, results of biopsies can be notoriously incorrect because the damage can be beyond the reach of the scope, the surgeon may not have biopsied a damaged section, and/or the pathologist is not experienced/skilled enough to determine if there has been villi damage. As long as your daughter's blood test is positive and her symptoms resolve on a gluten-free diet, you have your answer--she has celiac.
You've received excellent information and advice above, and I also believe that it's in your best interest to go gluten free. At first, you'll grieve for some favorite foods, but then you'll begin to enjoy the diet (which is very healthful) and find it easy. I no longer miss any particular food, especially since gluten-free versions are available.
I would venture to guess that after you've been on the diet for six months or longer, you'll have some type of negative reaction to eating gluten. For many of us, the longer we go without gluten, the more sensitive we become to even the smallest amount of cross-contamination. Because you're not sure if you wish to follow a gluten-free diet, I would strongly recommend that you try it for at least six months and then eat a small amount of gluten. I think you'll have your answer then. For many of us, the disease was "silent" until, all of a sudden, we began having terrible symptoms--some of those symptoms can remain for life even on a gluten-free diet. Why take that chance? Count yourself as extremely fortunate that your doctors caught this before you lost your health. Probably 99% of the people on this forum wish they'd had such a lucky encounter with a doctor before the symptoms began. You are so VERY fortunate--please don't throw away the precious gift of health you've been given by your alert doctors.
I've found that even when a restaurant offers a gluten-free menu, sometimes the server is new and hasn't been trained properly in submitting the order to the chef. Now, I always ask the server if he/she has received training in serving meals off the gluten-free menu; if not, I respectfully request another server or even the manager. I explain how very dangerous gluten is to me, and I've never had a server seem upset--actually, they seem relieved.
Also, if a restaurant doesn't have a gluten-free menu, you're usually safe with a plain chicken breast or a steak and potato. Mashed potatoes, though, can be dangerous--oddly enough, many restaurants use flour in their mashed potatoes, and if you order mashers without gravy, many times they will automatically pour gravy on them, and then you have to send the whole meal back to the kitchen. I've found that eating at Tahoe Joe's or Outback Steakhouse is usually a safe experience.
Luckily, Thai food has many gluten-free offerings, and it's close enough to Chinese food that I don't miss it much. When I really DO miss it, I go to PF Chang's. They added more offerings to their gluten-free menu about six months ago. One of them was my previous favorite meal before I knew I had celiac, so I checked it out. Unfortunately, it was perfectly awful--I was told I was the first person to order it, and I think perhaps the item was so new, the cooks didn't know how to prepare it. Anyway, I complained to the corporate office (because I had originally written them a letter thanking them for expanding their menu), and they sent a letter of apology and asked me to return to the same PF Chang's to order the same dish. They promised that the problem had been straightened out. So...even though the thought of eating such awful food again made me queasy, I went back and ordered the same dish. I was surprised--it tasted exactly the way I remembered before my diagnosis! It was, quite simply, one of the best meals I'd eaten in years. I think the manager suspected I was the "complainer," and he was extremely solicitous--he must have asked me half a dozen times if I'd found my meal satisfactory. He looked extremely relieved when I assured him that I loved my meal and that I would let the corporate office know how wonderful the dish had turned out. I believe that PF Chang's is very dedicated to maintaining a safe and expansive attitude towards people with gluten sensitivity, and I was impressed with how quickly they resolved this mishap.
I know how you feel. Even though my family has been very understanding (but, then, a third of them ended up being diagnosed with celiac after I was), some of my friends have either acted irritated or thought my condition was ludicrous or all in my head. My boss even made jokes in front of me, rolling his eyes when I asked questions of servers at restaurants. Then a glutening caused me to be unable to absorb iron, and I was on intravenous iron once a week for two years. The boss didn't find that too funny, since I had to take time off from work each week. I was well for a few years, and then I got accidentally glutened at a potluck eight months ago. A month later, both of feet suffered from stress fractures. I limped and wore a walking boot on one foot for months before I figured out that the problem was due to floppy tendons caused by malabsorption of zinc. When people see you walking in pain for months, they begin to put 2 and 2 together.
You can use these types of situations as examples of what can happen from a simple, one-time glutening. As we become more sensitive to gluten, parts of our intestinal lining can be destroyed in a heartbeat by cross-contamination...and then we're left with disabilities, either temporary or permanent. Explain to them that malabsorption of calcium could cause your teeth to break and osteopenia, malabsorption of Vitamin A could lead to night blindness, malabsorption of Vitamin K could cause you problems with clotting--you get the idea. People need to have a strong visual aid in understanding how debilitating celiac can be. I think most people think that you probably have a little tummy-ache that goes away by the next day. They don't understand that we feel foggy-brained, exhausted, headachy, and can end up with DH and a destroyed intestinal lining with the many complications that come with it.
I believe people need to be educated and that we must act as advocates so that the undiagnosed will seek diagnosis. I realize that you've been advised that people can respect you, but they may never understand your problem. I feel it's the reverse: You CAN make people understand, but it's up to them if they will respect you. I have many friends and family members who respect my condition and are supportive--I don't need to be around people who, once they understand a medical condition, continue to mistreat the affected person. Most people, once educated, are much more understanding and respectful. Good luck!