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A quick update on my son's results and our gluten status.
My son's biopsy came back negative and he isn't low IGA. Everything looked clear and good in the scope. They actually gave me pictures too. His GI is great and we both agreed that he doesn't need to go gluten free at this point. He's currently taking a medication to help with his appetite and it has helped so much. We don't want to limit his food intake further by going gluten free. His special needs are neurological (hemimegalencephaly) and it's much different than explaining to a typical kid that they can't eat certain things. So that's where we stand with him.
However, I am totally gluten free again and feeling so much better. My daughter (11) made the switch of her own accord the day after Thanksgiving and feels amazing. I got confirmation today from my son's GI that with my daughter and I both having low IGA that Gluten Free is the best choice for us. With the low IGA we are at risk for celiac later and Crohn's and that non-celiac gluten sensitivity is common for people with low IGA. I already knew that we were both going to have to eat this way, but a little confirmation was nice. Especially since I haven't been able to get the rest of the medical community to listen or refer either my daughter or myself.
Thank you to the many who responded to my first post. Your wealth of information confirmed so many things for me.
My son's scope and biopsy all came back clear. Clear for celiac and anything else they were looking for. I'm relieved for him but still don't have answers as to his weight loss. We are going to neurology to get another MRI and check for hydrocephaly.
At this point, I can't get a referral to the GI for me in our town. I had hoped that if he came back positive that it would result in me being able to get a referral. I've decided to just go back to eating gluten free for myself because I can't tolerate the symptoms of eating gluten any longer.
I feel like I'm back where I started with no answers. But I'm deciding that my low IGA is going to have to be enough of an answer for me right now. Insurance companies and such make me sooo crazy. My level of frustration about the entire subject cannot be explained in words.
As for my daughter, we did a trial run of gluten free for 3 days which I know wasn't nearly enough. Without an actual diagnosis, we question whether putting her through a longer trial is worth it. I will be mentioning her to my son's GI when we go back in December and seeing what she thinks. I'm also hoping to get her insight into my blood results and where to go from here.
Thank you for your previous answers and insights. Wondering if anyone has come across someone with low IGA that isn't celiac?
"Celiac blood testing is not reliable in those who do not make normal quantities of IgA (or IgG). This test is run as a control to ensure the validity of the other testing. That your doctor did not realize this leaves me speechless."
This too leaves me speechless. So we decided to get an appointment for me to a GI, one that has a clue about celiac. I will be continuing to eat gluten hoping for an endoscopy by the end of the year. Getting a referral for my daughter will be more challenging but i will begin the fight. My daughter is almost 11. My son's neurological problems are diagnosed. Sorry I should have been more specific. He has a rare brain abnormality called hemimegalencephaly. It affects the right side of his brain. He had a functional hemispherectomy when he was 17 months old because of intractable seizures. He's seizure free now but has low muscle tone on his left side
He is scheduled to go under anesthesia November 9 for a scope and biopsy for celiac and 20 other disorders. im anxious to get his results back. he totally needs to go gluten free but not until after that biopsy. he has a great GI which is who got us started on this path in the first place.
Lisa, thank you so much for the response! After re- reading my post I saw that my b12 should have been 396 not 96. Why is there any response in our tests? Why are they not all less than zero? Does the slight response mean anything?
The most glaring item in both your's and your daughter's test is that you are both IgA deficient. Neither one of you can expect to ever have a positive IgA based test. I've never heard of a Total IgG, but you may want to check if that may be causing negative IgG testing. With symptoms and deficient IgA you &/or your children could have an endoscopy - of course if you have been gluten-free most of recent history, there may not be measurable damage. There are folks on this board that had negative blood work and positive endoscopic biopsies. Also, children can often have false negative blood results. If there are symptoms - don't dismiss them based on bloodwork alone.
Secondly, your B is VERY low not just low. Considering you are supplementing both B and D it is suspicious and very common in Celiac Disease. I'd suggest more nutrient blood tests for both you and your kids. Celiac Disease prevents nutrients from being properly digested and absorbed into the body - thus causing havoc in any system from lack of nutrients. My Celiac Doc uses: All Bs, D, K, Iron, Ferritin, Copper and Zinc. CBC (Complete Blood Count) and CMP (Complete Metabolic Panel) can reveal a few more clues.
So I'd do one of two things:
Find a GI that specializes in Celiac Disease - maybe one in Peds and one for you. A local Celiac support group can be a great resource to find a good doctor near you.
Remove ALL gluten from all of your diets. The cost can really be offset nicely by avoiding processed foods labeled gluten-free -- many of these are very hard on healing digestive systems so it is strongly advised to stick to whole foods while healing. My house is completely gluten-free - we evolved as I became more sensitive and my teens decided to go gluten-free -- when they tested negative I was genetically tested - all my kids have at least one copy of celiac genes - maybe more. All of my children and two grands had symptoms of celiac - none of us had the same symptoms!! My kids have all had greatly improved health gluten-free. The diet is often the best test. My husband has no issue with gluten, but is gluten-free at home with gluten items in his office and goes out for gluten meals occasionally. We don't really miss it in the house anymore because we've replaced all our favorite foods.
It can be important for school and other reasons to have an official diagnosis, so don't remove gluten if you plan to explore further testing.
I've got so much information floating around in my head; I'm not sure where to start. I'm trying to make this short but complete because I could really use some information from people who have BTDT.
I went gluten free about two years ago and it made a world of difference for me. I have since discovered that there were many things that I didn't know had gluten in it. I had a decent amount of cross contamination in my life and ate french fries when at fast food. It did not matter to me at the time because I always felt like, "Well, I don't have to worry to much because it's not like I have celiac."
Someone called me on that recently and asked if had been tested. I stated that I hadn't and it got me thinking.
I have a child with a very rare brain abnormality (long story, but it isn't a genetic disease) and he has been having lots of GI problems since he was very little. We (hubby and I and Dr.s) have associated it to low muscle tone and lots of kids with his issues have chronic constipation. (He's 9 and still in diapers because of a bowel incontinence issue which we have been trying to work on since March) The NP at his GI office is so great but we don't get to see her often.
I recently went back on gluten for 4 weeks to attempt to get some blood work done. My son's blood work came back fine (according to the GI office) but truthfully, I never asked to actually look at the blood work. My daughter doesn't have special needs but has lots of things that I had when I was her age and rather than letting her go gluten free, I wanted to get her tested first. I was told by her ped. that it all came back normal. So today while in their office for another issue I requested a copy of the blood work.
Here's my blood work after only 4 weeks on gluten. I do realize that I probably didn't eat it long enough. But thought that the 4 weeks might at least show something, especially considering that I wasn't 100% compliant in the last two years.
Vit B12 96 Range 176-840 Low but not horrible
Vit D 28.5 Range <30 is considered low
TTG AB IGA <1.2 Range <4 Negative (Not sure but is mine a negative 1.2 or just 1.2?)
TTG AB IGG 3.1 Range 0- 5.9 Anything below 6 is negative it says
Anti Gliadin Ab, Iga 2.2 Range <20
Anti Gliadin Ab, IgG 5.3 Range <20
IGA L 52 Range 80-450
IgE 9.6 Range 0-158
My daughter's (She was eating gluten and has never gone gluten free.
Gliadin (Deamidated Peptide) Gliadin AB IgA 2 Range <20 Antibody not detected
GLiadin AB IgG 3 Range <20 Antibody not detected
Endomysial AB, IgA Negative No reference range
TTG IgG <1 Range 0-6
TTG AB IgA <1 Range 0-4
IGA 22 Range 30-220
There is an asterisk next to her IGA and it says it was verified by repeat analysis but the doctor never mentioned it.
Our family history included my grandmother who died in her 50's of lupus. My mother who was diagnosed fibromyalgia and two different types of arthritis and lots of skin problems lately and stomach problems. She believes she's allergic to garlic. Then me having positive success off gluten and back on I have stomach issues which have plagued me for as long as I can remember, skin issues on scalp and face. My son's GI office had said his celiac panel was normal and I confirmed yesterday by phone that his IGA was not low. He is still scheduled to do a scope and biopsy because he has to go under for another procedure anyway.
I've been reading some about low IGA affecting the celiac panel results. But when I look at my daughter results I see that her TTG IgG is <1. Does that mean less than 1? Wouldn't that indicate negative celiac? Why then does her other Gliadin IgG come in at 3 and does that mean anything? To me it means at least a sensitivity. The low IGA doesn't affect the IgG results right? I'm trying to decide if it is worth it to have her go gluten free. It can be so much more expensive than a typical diet; I just want to know that I have valid, documented reasons for doing so. It will make the budget part of it easier.
As for me, my results in IGG were low too so I have the same questions. It can be explained away in my case because I didn't eat gluten long enough potentially. Even if I doubled my numbers to account for the length of time that I ate gluten, they still aren't in the High range. But I do have low vitamin B and D and I supplement those on a regular basis.
I'm quite frustrated by a response I got in the ped. office today about all the gluten free/dairy free stuff out there is "anecdotal". She suggested that I have my son looked at for reflux. In my head, I was thinking but WHY might he have reflux and the sinus infection, and swollen and irritated throat. Couldn't it be a gluten dairy thing causing a reflux? I guess he could have reflux because of his neurological issues.
I would love to hear some opinions today. Thanks in advance.