July 12, 2013 at 11:23 am #8485LAURAGFMember
Dear Dr. O, or whomever may answer to this blog from the GFS.
I am a Spanish pediatrician suffering from gluten sensitivity who have finally become a member of your SocietyI have some queries:I have heard that DQ7 and DQ9 also might play a role in gluten sensitivity. is that true?I don’t understand what you mean when you say that you check on both alfa 1 and alfa 2 from HLA DQ. I was told by inmunologues that alfa 2 is not relevant for gluten related diseases. You also check on DQ beta, I suppose?I am, what we here call “half DQ2” (I have DQ2.02 haplotype, instead of the common DQ2.05 haplotype), which is commonly found in patients with GS who do not show positive serology tests for celiac disease.My 15 year-old half brother shares my same DQ2. He has psoriasis and marrow aplasia (aplastic anemia). I have seen that there have been 9 cases reported in the literature of celiac disease and aplastic anemia, with a variable response to the diet (classic GFD, that is).I have put my brother on GFD for the past year, with mild results (the three blood cell series are stable but he is suspected of developing a mielodisplasic syndrome and may need a bone marrow transplantation). He has now started eating little corn, but, since he is only 16, the diet is hard for him to follow and I don’t dare stop him from taking dairies too.I have seen that in your forum or in other forums on gluten sensitivity many people comment on “low white blood cell count” or low platelet count that finally respond to diet.Our father is also DQ2.02 possitive.My sister (same parents) has the combination DQA1 05:05 DQB1 02:02 in trans, possitive. She has psoriasis.Dr. O, have you had any patients with aplastic anemia?Should I restraint my brother’s diet? He is on cyclosporineOne more concern, this time about myself:My main complaint, other than the paresthesias I have had for years in my hands, is that, ever since I got myself operated from refractive surgery for myopia, I don’t manage to see clearly, specially the printed material when I read… Even if the ophthalmologist who performed the surgery says I have been left with almost no graduation.I have the same complaints that people have after the surgery which last for 2-3 months at the most…, but my brain doesn’t seem to get aquainted with my new non-myopic eyes!!! It has been more than a year since the surgery. and I also have difficulties seeing if there is strong light.Have you ever had any patient with such a problem?Also, I feel that coke and coffee worsen my symptoms. Should I stop taking them also?Thank you for your attention.From across the ocean,Yours faithfully,Laura.September 24, 2013 at 8:15 am #10337Peter OsborneKeymaster
We test for HLA-DQ alpha1 and beta1 gene alleles. There is no alpha2 check.
If you brother is stricken with psoriasis and aplastic anemia, he needs to eat grain free and most likely dairy free. In my experience, psoriasis requires dairy free as well.
I would consider running a food allergy panel on him (both Ige and delayed hypersensitivity). You should also have his b-vitamin levels checked. Especially vitamin B-12. Don’t look at serum levels, as the accuracy is questionable. I recommend spectracell labs. If you can’t access them in Spain, consider testing MMA (methylmalonic acid) and homocysteine levels. B-12 deficiency is the most common nutrient deficiency (along with iron) in those with gluten sensitivity.
As far as your health issues are concerned – It sounds like you might not be healing appropriately after the procedure. You should have your nutritional levels checked. Often times L-glutamine and vitamin C deficiency will postpone healing or prevent appropriate healing after scheduled trauma.
All the best,
Avoid coffee. Never drink coffee. Live by the three cardinal rules of nutrition:
1. You can’t achieve or maintain health eating unhealthy foods.
2. Never eat what you are allergic/intolerant/sensitive to.
3. If you feel bad after eating it, stop eating it.January 25, 2014 at 8:05 am #10359LAURAGFMember
Dear D. Osborne:
I am giving my brother your vitamin B12 supplements. He is also taking liquid K2 vitamin (it helps prevent mielodysplasia), your Ultra Inmune IgG Formula, vitamin A, vitamin C, probiotics, oligoelements, B complex with Magnesium (most of those supplements from the company Nutergya, grain and soy free).
His platelet count specially persists down. He is on cyclosporine. He has been eating grain free, except for rice, for 7 montns now. He ate casein free for two months with no improvement a lot of inconveniences for him to keep so I am letting him eat milk and milk derivates.
Any new advices on how we could help him? I believe cyclosporine may be keeping low the platelets…
As for myself, I am taking vitamin C, Glutamin, (as you adviced) your B12 and Ultrainmmune IgG, the same supplements as my brother is except for k2 and I also take Zinc and Omega 3,6 supplements. I believe maybe my photosensitivity and blurred night vision after refractive surgery may be because of lack of Zinc and Vitamin A partly…
I have been performed the A200 test we have here: IgG against 200 different foods typical from the mediterranean diet, which is performed in Barcelona and, together with the Alcat test, is the only one we have. I have tested possitive to twelve different foods which I am avoiding, including wheat (I tested possitive after 1 year of GFD) but not gluten.
I have eaten grain and casein free for 7 months now (1 year of classical GFD before that). Although I am better, I still have numbness in my hands and forearms, tiredness and foggy mind, together with difficulty seening “contrasts and printed material in white paper” at night time with photosensitivity.
I do not know of any labs that perform analysis that check nutritional status here in Spain. I eat very healthy. Grain fed cow meat is too costy for me to afford, only.
Any new advice on more supplements, dietary change I should take? I believe I am “lacking something”.
I once had vitamin B12 intramuscular given for one month during a stay in Kenya. I believed that ” awakened me and revitalized me”. Is it possible that I dont absorb properly your sublingual methylcobalamine?? My brother hade his B12 levels checked by the haematologist and he had 6 folds the normal, so I truly believe it has large biodisponibility
Thank you in advance.
And thanks for bringing me into the Gluten Summit which was simply wonderful.
Greatings from Spain,
LauraMay 31, 2014 at 8:51 pm #10385Peter OsborneKeymaster
Have your brother stop eating rice immediately.
You might consider a phone call with me. This topic is far too broad to discuss in forum format. That being said, I would encourage you to have B12 injections every two weeks for 6 months. It is possible that your GI tract is damaged to a great enough extent that absorbing this vitamin from food may be challenging.
Remember to also be patient. Nerve damage typically takes the longest to heal.
All the best,
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