This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
Where can I buy gluten-free stuff?
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Not on Dapsone, but have found that OTC corticosteroid cream helps lesions clear more quickly and helps with the pigmentation a bit. You don't want to overdo it with the cream as it thins your skin, so only apply to affected areas for a short period of time. Coconut oil (the kind you eat) applied to your skin helps with the dryness and seems to help healing a bit.
I would recommend Squirmingitch's advice - go with the Fasano diet. At the very least, avoid eating foods prepared by anyone but you at all costs and try to stay away from open flour/baking. Many celiacs claim to get away with doing these things (and maybe they truly do), but when your reaction manifests externally, it's difficult to pretend that risky behaviours are going below your immune system's radar.
The Rash and various other symptoms are strong signs of Celiac, multiple people in your family also have it. I see several of your symptoms as very familiar to me myself, and I know that supplementation will help resolve the rest of your issues with a gluten-free diet. While we do suggest getting tested for confirmation if your limited as you say with insurance, and money then doing what is best for your health should be your focus right now. Go ahead and remove the gluten from your diet if you wish and go gluten free. If something happens later you MIGHT be able to put up with a gluten challenge and get tested at a later time.
I feel for you and see the issues, I have Medicaid myself and my severe gluten reactions and allergies got me on disability for a good while. Testing was a pain in the ass for me as finding a doctor that takes Medicaid is bloody near impossible where I live.
I do suggest supplementing Magnesium, Iron, Vitamin D, and B vitamins primarily right now. Others you might be low in are folate, E,C,A and various others. The nerve issues are strongly related to various b vitamins, magnesium, and D. I will share a link of what I take for a example.
BTW have you checked out the newbie 101 thread? And if you need help finding gluten-free foods I have a huge list that I have complied for people although we normally suggest a whole foods diet only for the first month or so. Might want to drop dairy and oats for a bit, by the sound of your deficiency issues I would say it would be a huge help doing so.
Has your daughter been checked for vitamin deficiencies???
Vitamin D deficiency symptoms include urinary incontinence, oral candidiasis (thrush), skin rashes, bumps on the backs of arms, joint pain, distended stomach and short stature. Bones can't grow much without vitamin D. Vitamin D deficiency causes delayed gastric emptying (food doesn't move through the gastrointestinal tract at a normal speed and the intestines bloat) which explains your daughter's delayed reaction to the cake.
Vitamin A deficiency is also a cause of bumps on the back of the arms. Vitamin A deficiency causes vision problems. Vitamin A and D are both fat soluble vitamins. Absorption of fats is a problem for Celiacs. So is absorption of B vitamins and important minerals. B Complex vitamins are water soluble and must be replenished every day. Skin rashes are associated with several B vitamins like niacin (B3), B12, and thiamine (B1).
I went through a period of severe malnutrition prior to diagnosis. It was not a pleasant experience. I had symptoms similar to your daughter's, including the incontinence, which resolved on vitamin D supplementation.
Please, please have your daughter tested for vitamin D deficiency. And have her B vitamins checked as well. Celiac Disease causes malabsorption. Malabsorption causes deficiency diseases. Newly diagnosed Celiacs need to be checked for deficiencies.
I hope this helps.
I will try to make my long story short, I have been searching my whole life for a diagnosis, I have seen pretty much every doctor possible I even went through a spinal tap recently because they thought I had multiple sclerosis, when I was younger I was always throwing up and having stomach problems, a couple hospital visits they thought I had appendicitis, I started having a neurological symptoms as well as anxiety and depression, The fatigue was just over bearing, I was having numbness and tingling and muscle spasms all the time eventually started having seizures, which kind of cycled through and stop happening after a couple months, and then it dawned upon me my brother has celiac pretty severely, my grandmother also has celiac, my dad does as well, I don't know why I never thought that it could be my issue, for the last week I have Been gluten-free and steering clear of cross-contamination, my dizziness is improved my fatigue is improved as well as rashes I was getting on my arms and sides, I have no more muscle jerks or spasms, The problem is I have horrible insurance and I cannot afford testing, so I am at least trying to do it an home blood test, I know it's not very accurate on telling me if I have celiac or not, But the thought I may never know for sure if I have it is very daunting. My family keeps telling me you don't need to spend thousands of dollars to have a doctor tell you you can't eat something you already know you can't. Just was wondering if anybody else has been in my position and seeing if anybody has a vi just was wondering if anybody else has been in my position and seeing if anybody has advice, I don't want to be known as one of those people who believe they have something and people with the disease frown upon them it's a very scary thing to think about.