naLeukemia? Lupus? AHHHHH!!!!

I think you are going about this the hard way. You're trying elimination diets, and that is a nightmare because a) not everything is labeled clearly and b) it takes weeks or months to get any results. Do you really want this to be the life you and your child lead?

Have you been listening to anything about epigenetics? Don't' go crazy with internet searches - just concentrate on major news outlets like Time and Newsweek, people you can be sure do decent research. You already say that issues run in the family - that is epigenetics at work. The huge rise in autoimmune conditions such as the ones you name (and there are others) has prompted the last 15 years of research into food science and what the effects are of various food peptides, isoflavones and so on.

I have worked with hundreds of people with significant food "allergies" and it's important that you realize how much the science has changed. The most heavily researched nutritional ingredient in the last decade has been shown to reduce inflammation, increase immunity, and repair the damage to the epigenome (what's on top of and around the genetic material in each cell and which causes individual genes to turn off or on - this switching is what tells the cell what function it's to perform, which varies tremendously according to the type of cell. Nerve cells do something very different from retina cells or bone cells or smooth muscle cells, right?) So the reason the autoimmune conditions run in both families is because of changes in the epigenome of many cells. This is a reversible condition.

You've seen the huge increase in allergies - a generation ago, every child took a peanut butter sandwich on wheat bread and bought a carton of milk at school. Kids had birthday parties with Mom's cupcakes. Hardly anyone had asthma. School nurses weren't going on field trips with 180 kids, 100 of whom have medications (a statistic from a field trip the other day near me). So the way we have dealt with these issues - from massive elimination diets to medications to endless testing - has not worked. At all. Parents are, understandably, panicked about what it can all mean.

In my experience, I would say your child's issues are all related to the same thing. In a few months, you could significantly reduce these reactions - maybe not be able to give her gluten, but I would estimate that a number of conditions could be significantly alleviated. A colleague of mine has a daughter with CD, and while she does not eat gluten, she is completely symptom-free when any cross contamination occurs. There is zero reaction if she's near someone who is eating gluten, she eats in restaurants, and so on. I think it's been 8 years with no problem. The reduction in inflammation and the repair to the epigenome could reverse all these other things, and the preventive effect is unbelievable.

With research and patents (very unusual on food products) and clinical studies, I think your daughter could totally turn around in a short time. The eczema cases that have cleared up are in the thousands, for example. You might want to look into this more for your connective tissue disease - I've met recently with quite a few people who are out of pain, out of a wheelchair, and more, so these are significant cases of impairment which have seen improvement. And it's so much easier to add the necessary nutrient than to remove dozens which may or may not be the problem.

ooh L.!! I'm sooo sorry!! You know you HAVE been missed here!!

So the allergy tests have been done and she's allergic to nothing?

Now the good news with the leukocyte tests for white blood cells, that she was LOW is NOT good - but that means you can ease your mind about leukemia....if she had leukemia - she would have TOO MANY white blood cells.

So now that those came back LOW - the doctors can regroup and start going in on more specific things.

I see that someone already suggested the elimination diet (ooh I don't like reading ahead!!) but that would have been my suggestion as well.

{{HUGS}} to you, L.!!! I wish I could tell you what's wrong! I will pray that the doctor's find an answer!!

ooh I am so sorry! I wish I could help you.

I would keep fighting for your daughter! Stay off the internet!

Make a list of all your concerns and have them checked at the next appointment.

Have you tried the elimination diet? I know it's hard with a 4 year old. Cut out dairy. Keep her diet as simple as possible...as bland and unprocessed as possible...log everything she digests and see how that affects her. Eczema is typically an allergic reaction to something. Then slowly start adding stuff back in her diet.

I wish you much luck! I can't imagine having all this going on!

S.

I have nothing to add, just wanted to say sorry you are going thru this and your daughter.

In your so what happened, you said she is Lactose free. Is she Casein free? it is the protein in milk, and if she is still getting it, which she would be with a lactose free milk, then this is the most likely culprit! She is allergic to milk protein not sugar. My family has a long history of getting eczema from milk. My sister, her kids, my husband, our kids, etc. The eczema has been so bad that it sounds almost as bad as your daughter's. If you can't get any real information until they do more tests, then I would cut dairy, cow and goat, from her diet.

I hope this is it because it is so simple. Oh, the other thing it could be is Soy. Same thing. Good luck.

ETA: I just remember that my daughter will break out if she eats too many nuts, especially peanuts. But, that one is so obvious, I figure you have already tried it. Good luck! We'll pray its something so benign.

My daughter was diagnosed with pre B cell ALL (leukemia) in July of 2013. The first signs we had were unexplained, fairly severe bruises and petechiae (little purple pinpoint bruises) for about 5 days. I thought it was bruising and floor burn from playing with her sister. Then she woke up with a fever. We took her to the pediatrician, that that day she was admitted to the hospital.

The first thing they look for in the blood work is a high white cell count. My daughters was 75,000 (which is considered high risk leukemia levels). They were also able to see leukemia blast cells in her bloodstream. She also has a fungal infection in her liver that's difficult to treat while she's getting chemo. She's been getting chemo for 9 months. She's doing much better. Her infection is under control, and her leukemia is in remission. But she still has a minimum of 2 years of chemo ahead of her.

What were her neutrophils, hematocrit and hemoglobin? I'm very familiar with my daughters blood counts....

I think if the doctors had any reason to suspect cancer, they would have told you and checked for it immediately.

My daughter has had recurring cyclic neutropenia (recurring low neutrophils and the others) and has Mixed Connective Tissue Disease and several other diagnoses.

Have they checked her ANA levels and other indicators of connective tissue disease? Why won't your allergist do testing? My daughter had both the allergy blood tests and skin prick tests which revealed some really strange allergies so now we know which foods to avoid.

And I don't want this to sound rude, but just trying to be helpful, to think of everything, have you educated yourself about all the forms gluten can come in and all the different sources of gluten? Things like oats that are frequently cross contaminated must be certified gluten free in order to be safe. You wouldn't think there's gluten in oats but many commercially grown oats are cross contaminated.

When my daughter started taking Plaquenil her neutropenia and low leukocytes and other abnormal blood levels became steadier and more normal.

I'd encourage you to keep a food journal and track her symptoms. Be extremely specific (don't write "cheese", write "Kraft 2% singles, one slice" for example).

Don't stop advocating for her!