M.B.
Hi V.,
It could be that she also has issues with goat's milk - the protein is different than the protein in cow's milk (casein) that typically causes the allergic reaction, but the molecular structure is close enough that it can cause problems in some people. Both myself and sons are allergic to casein and we must also avoid goat's milk (unfortunately). Lactose intolerance typically will not cause problems that severe in my experience. I had originally thought I was just lactose intolerant about 16 years ago, so I went off dairy and alot of symptoms resolved, although some tummy issues remained. I wasn't diagnosed with a dairy allergy or gluten intolerance/celiac until another 10 years later.
It is NOT at all uncommon to have both a dairy allergy (and other food allergies) and gluten intolerance. Indeed 1/2 of the people with gluten intolerance/celiac also have a dairy allergy. The reason is that the gluten damages the intestines - causing a "leaky gut" and thus other proteins that should not be in the blood stream are. This is due to a substance called zonulin that is what controls how long the intestines allow nutrients to flow into the blood stream. In folks with gluten intolerance/celiac, zonulin levels are abnormally high and thus these junctors stay open longer and thus let alot more stuff (proteins) into the blood stream, thus there can be alot more immune reactions.
Blood tests for gluten intolerance tend to be fairly inaccurate and few doctors will run the right tests to catch the end stage of gluten intolerance which is celiac disease. Dr. Baker in Plano is good if your child does have end stage celiac, but he is a conventional doctor and I would be surprised if he acknowledges gluten intolerance which can be a pre-cursor to celiac or never manifest as classic celiac, but can still impact the gut and other bodily organs and systems. Both the brain/nervous system and thyroid seem to be the most impacted when one is gluten intolerant. And, the genes influence which systems would be most impacted. All my family are gluten intolerant and have the main celiac gene DQ2 - this gene goes along with autoimmune thyroid disease. Some of the other gluten intolerant/non-celiac genes seem to manifest more often as nervous system issues. I and my older son also have a gluten intolerant gene. My younger son is doubled gened for celiac - DQ2 and DQ8, so he did have the most severe and overt reactions to gluten, which was the constipation despite a very good diet.
We ended up using enterolab: www.enterolab.com because I got tired wasting my time and money with doctors that are so very unfamiliar with this issue. It is the most common undiagnosed genetic illness. The doctor who founded enterolab is a top notch GI doctor who ran the research at Baylor (and was in line to become the head of GI at a major hospital), however, his research found these gluten antibodies in stool samples when he was researching microscopic colitis. He thought it was so important the public have access to this testing that he quite his job and founded a non-profit (Intestinal Health Institute) . IF he had kept with mainstream, it would have taken 10-15 years before anyone in the conventional medical community would know about this test. As it is right now, there is a drug being developed to treat celiac that will likely be available within the next 3-5 years. I can absolute guarantee you that once the drug is available, the majority of doctors will be using a test like Dr. Fine's to diagnose their patients.
The enterolab test is far more accurate than blood tests as it is a stool test and that's where the immune reaction starts - in the gut - it can take a while for the damage to get to the point that there are also high levels of antibodies in the blood. The enterolab test is 100% accurate for celiac disease, which again only catches a very small subset of folks whose immune systems are impacted by gluten.
It is important to understand that many local DFW GI doctors don't respect Dr. Fine because he challenges the 50+ year old status quo in terms of diagnosing celiac, which is a very normal reaction to a novel idea (it was the same situation for the guy that discovered that ulcers were caused by a bacteria - that guy ended up getting a nobel prize ;)
Dr. Fine's research is soon to be published and it will be landmark, so please if you do go to a conventional GI doctor and mention Dr. Fine and inquire about the enterolab test, you may not get a postive response. But, please don't get discouraged. When we took the enterolab test results back to our local pedi, he fully acknowledged the validity - you just have to keep in mind that many doctors were previously taught this was a rare disorder, so they just don't consider it.
I can't urge you strongly enough to rule out the gluten intolerance and PLEASE do so before "trying" a GF diet. IF you try the diet, the antibodies may decrease, BUT the child may not improve enough to show that gluten really is the issue. The time to heal varies dramatically and is highly individual - some folks may notice a difference in days, whereas others it can literally take years - in particular if you've reached the point of having other issues such as thyroid disease. The testing and knowing for sure is SO very important because the potential for having other issues increases exponentially over time. If you catch it soon enough, you can save your child so many health issues later.
I am so emphatic about this because my kids had symptoms from about the same age as your daughter but were not tested until they were 8 and 10. So, they now both have autoimmune thyroid disease that was diagnosed when they were almost 13 and 15.
My oldest son improved in 2 weeks = it took my younger son over two months. And, two months is a very long time to put a child on a strict GF diet. Also, it generally takes 6+ months to really learn the diet well and remove all potential for cross contamination in particular if your entire household is not GF .
Sorry to be so long, but again alot of folks aren't familiar with all of this information (I am a scientific researcher by profession. In working to resolve my families health issues, I naturally did alot of research and have read ALOT of published medical research in this area, as well as having attended a variety of medical conferences. So I am fairly confident in the information I'm sharing. I also work with a local support group and just keep coming across so many mothers that instinctively know this is their child's problem, but have doctors that are ignorant and as mother's it can still be difficult for us to be comfortable challenging a doctor's authority. But, as a result, the child suffers for years and finally the mother does the enterolab test. I just don't want other children to have to suffer like mine have nor like others that I know have.
And, one final comment, one of the reasons few doctors really want to recommend a GF diet unless the conventional tests are positive is because they (and alot of people in our society) believe that it's not right to deprive our children of certain foods. My kids do miss pizza, donuts, etc. BUT, there are now GF substitutes for all these things. And, my kids would NEVER go back to eating gluten because they KNOW how sick it made them - that is the one advantage my kids have in being diagnosed later. However, they did not realize how sick they were until after the fact. So, that's why there are so many that haven't been diagnosed - the patients just don't know that how they feel isn't "well" because that's their normal and again the doctors just aren't trained even when the patients have the symptoms. It's far easier to just Rx a medication for the symptom - e.g., reflux, etc. Also, I have found parents who are not gluten intolerant believe that it is torture to put a child on a GF diet unless they are diagnosed conventionally. So, in the end, I am actually very thankful that I have this too because I do know absolutely what it feels like for a food to make you so very, very sick.
Good luck and pat yourself on the back for being so proactive about this!
