Questions About Lab Tests

[momof4gf]

Hi! I have been trying to figure out what is wrong with my son who has suffered from neuro problemsu all his life - poor balance, coordination and strength. Also started having frequent/daily headaches a couple years ago then migraines about once a week 1 year ago. After years of going to doctors with no answers I tried him on a gluten free diet this summer with amazing results. His balance, strength, and energy significantly improved and he had no headaches on the gluten free diet. After 3 months I put him back on a regular diet for 5 weeks and took him to a GI doc to have celiac testing. She told me today his IgA antibodies were normal, his only abnormal labs were a high sed rate and a high c-reactive protein. She is going to do a scope but does not think he has celiac, therefore I don't think she was going to biopsy? I have to double check this. We are still waiting on the gene test results. I should also mention that all of his difficulties with balance and weakness have returned since resuming a normal diet, and it seemed to be a progressive worsening thing over the 6 weeks he has now been back on gluten. I also took my daughter who has lots of symptoms also, but not neuro. All her bloodwork came back negative for celiac as well as her gene test! But I thought she too had improved on the gluten free diet this summer. I am sooo confused! So my questions are:

1. Has anyone else had elevated c-reactive protein or sed rate due to celiac?

2. Is it possible to have a gluten intolerance without having the DQ2 or DQ8 genes?

I appreciate any input!

[ravenwoodglass]

1. Has anyone else had elevated c-reactive protein or sed rate due to celiac?

2. Is it possible to have a gluten intolerance without having the DQ2 or DQ8 genes?

I appreciate any input!

C-reactive protein is a test for inflammation. I had both high C-reactive protein and a high sed rate prediagnosis.

Yes it is possible to have celiac and not have either of those two genes. I am an example of that.

5 weeks back on gluten may not be long enough to give a positive result on blood work or endo. Since he did better off gluten and has seen his issues return back on it you really need to take him off gluten for good once the testing is done. His body has already told you the answer. Other family members should also be tested now before they are gluten free even if they don't seem to have symptoms.

[momof4gf]

Thanks for your quick reply. If you don't mind me asking, did you actually get diagnosed via a biopsy or blood work without the genes, or via an elimination diet? I was planning on putting him as well as my daughter back on a gluten free diet after the scope (and the holidays - per his request ) but even at 11 years old, he knows now that he feels so much better off of gluten. However, he was also dairy and egg free at the time. I've never heard of those 2 foods causing neuro issues like that, have you? I was just hoping for a diagnosis to help explain it to the kids and family members, as well as justifying strict adherence to the diet. I just don't know if I should cut out gluten only or also resume dairy and egg-free also. I also have 2 other children who display some minor symptoms so I have to figure that out, too!

[Emilushka]

C-reactive protein and sedimentation rate are both nonspecific markers of inflammation - anything that causes inflammation will raise both of them. They're useless for diagnostic purposes unless you are trying to track inflammation due to a known cause (watching the markers go down indicates that the inflammation is subsiding). In babies and young kids, the C-reactive protein can be used to track illnesses like pneumonias.

[sb2178]

Check which blood tests they did-- the neuro form of celiac tends to show up in AGA, which a lot of physicians don't use as a front line test any more. If they only did TTG/EMA, that would not necessarily catch it. Don't remember the references offhand, but google scholar should pull it up with good keywords.

There are some other interesting but unsubstantiated claims about different autoimmune conditions responding to gluten-free diets. Inflammation is one possible sign of many... so definitely keep an eye on it.

[ravenwoodglass]

Thanks for your quick reply. If you don't mind me asking, did you actually get diagnosed via a biopsy or blood work without the genes, or via an elimination diet?

I had a long and difficult road to diagnosis because I don't show up in blood work. Interestingly both of my children did show a low positive when tested even though their symptoms were no where near as severe as mine. And my DD had a postive endo. They were tested six months after I was finally diagnosed.

As a last ditch effort my PT nagged me to get to an allergist who would guide me through and elimination diet. I had given up at that point and my DD who was in her early teens had told me, with tears flowing, that the family would understand if I committed suicide. The elimination diet saw a response to wheat, a severe one, when it was added back in. I was then referred back to my GI who demanded a gluten challenge for the endo. He only wanted a week and by the time the day came for the procedure I was laying on the bathroom floor bleeding freely from my intestines. I got my diagnosis.

My DD is the reason I don't encourage folks to do gene testing for diagnosis. She went gluten-free after the GI diagnosed her based on blood and biopsy and did well. Then she went to college. The diet isn't easy in college but she was fine the first year while she lived in a senior dorm so she could cook for herself. But in her second year she went to an apt with other students. She was of course well healed by this point. She went to a major medical center and was retested and of course her blood and biopsy were then negative. The doctor also tested her genes and she was told she was never and never could be celaic because she didn't have DQ2 or DQ8. She went back on gluten and considers all her symptoms to be stress related. That is what prompted me to test my genes and I found I was a double DQ9. In the US that gene is not considered a celiac associated gene, it is tied to RA, but in other countries it is considered to be celiac associated.

[momof4gf]

Thank you for sharing your story, Ravenwoodglass. I am so sorry for your long struggle. I guess there really are no clear cut answers sometimes. This reaffirms to me that I should follow my gut to do what's best for my children. Their GI also told me there is no way they could have celiac without the DQ2 or DQ8 genes which are the only ones they were tested for. I just can't understand how they could respond so positively to a gluten free diet without having any antibodies. I do believe, however, that only the TTG IgA was tested and not the AGA. But, regardless, we will be starting 2011 gluten free!

[SaraKat]

My SED and CSR were normal at the time of diagnosis and I have had both of those tests done numerous times over the course of the year, they seemed to be popular ones with the different Dr's I went to!

[mushroom]

I have had very high Sed. rates and CRP's over the years. It seems most of it was coming from my psoriatic arthritis (mainly the psoriasis I would guess). Arthritis meds would control the RA component but it was not until I started using Humira (a TNF-inhibitor) and got the psoriasis inflammation under control that the CRP came down to normal (having been over 100). I just did a two-month trial without Humira and my CRP shot up again, and is now back down to 5 since I resumed the shots. So for me it was not an indicator of gut inflammation (which I had thought) but rather the skin inflammation