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So confusing- where to start

Discussion in 'Genetic Testing and SNPs' started by Karen O'Shea, Jun 22, 2013.

  1. Karen O'Shea

    Karen O'Shea

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    Hello I'm new here. I have been really unwell for about 8 months and on/off for a year in total.
    Symptoms are extensive - fatigue, brain fog, blurred vision,numbness tingling in face, arms and legs. Joint pains, stiffness, fevers, twitching, restless legs, insomnia, vertigo, lethargy, metallic taste in mouth, gluten intolerance, pressure in head behind eyes, swollen optic discs, raised intracranial pressure, thyroid and pituitary problems. That's some of it.

    I've had lots of tests, Comprehensive stool analysis, stress profile, lyme testing, Ct head, MRI Head, Hair analysis loads of bloods done at my GP office.

    Main summary so far
    Treated for Lyme based on symptoms and Igenex Test IGM 31 IND 39 IND 41+ IgG 23-25 IND 39 IND 41+
    No parasites or H. Pylori
    Normal sleep study
    Adrenal fatigue
    B12 initially low at 207 ng/l but daily injection of Methylcobalamin put this up above 1500
    Ferritin between 14-19 Mcg/l no response to treatment
    Vitamin D 13.4 then 25.4 few weeks later

    Most recently had 23andme test done which shows
    +/+ VDR Bsm & MAO A R297R

    +/- COMT V158M, COMTH62H, MTHFR C677T, MTHFR A1298C, MTRR K350A, and CBS C699T.

    So I think this means I am compound heterozygous for MTHFR and the CBS C699T further complicates this.

    I have 3 amalgam fillings and have had many vaccinations due to my work. Just prior to becoming ill I did the Dukan diet (high protein) which it seems may have aggravated the CBS problem.

    It’s all so confusing and Doctors in the UK have no idea about any of this, in fact I have seen Dr’s in Endocrinology (thyroid) waiting for pituitary as well, neurology, ophthalmology, infectious diseases, waiting for gastroenterology for weight loss, as well as my own GP on numerous occasions and none of them look at the whole picture and are just interested in their own area.
    I am on my own in this, I have a huge collection of vitamins and supplement bought over the last 8 months some help a little others make things worse.

    I started methylfolate a few months ago as I guessed I had the MTHFR problem based on symptoms but I had an awful time when I took it, felt like lots of electrical impulses in my head and awake all night. Currently I am on Probiotics, selenium, pantothenic acid, and yesterday I started manganese and have bought L Ornithine to start in a few days. I am thinking I will go out today and buy molybdenum as well.

    I have read some of Dr Yasko’s book but I am unable to access tests, I fought with the neurologist yesterday to measure my mercury and aluminium levels but she doesn’t think the lab will carry out the tests. I have sent a hair sample off a few days ago for mineral testing privately but haven’t heard about any results yet.

    Any help would be much appreciated. Thank you for reading.

  2. xchocoholic

    xchocoholic Senior Member

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    You said u were gluten intolerant but i didn't see other food intolerance. Most
    People will have more than one intolerance from my experience. Gluten cross
    contanimation can keep u sick. Also it can take awhile for u to heal. I would
    back off your supplements and just eat paleo for awhile. Give your body
    The nutrients and Time to heal. Supplements contain fillers that can be toxic
    so reactions don't mean you can't take that nutrient. X
    Karen O'Shea likes this.
  3. xchocoholic

    xchocoholic Senior Member

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    Btw if you go to a paLeo forum you'll see what I'm saying. Tc ... x
    Karen O'Shea likes this.
  4. Karen O'Shea

    Karen O'Shea

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    Thanks, I am only intolerant to gluten I appear to be ok with other foods. Gluten causes my thyroid to swell within 24 hours. I have been gluten free since Nov last year when I realized this, have had the occasional slip up when eating out which always causes the reaction I described above.
    I did notice that my selenium contained gluten last week though so have switched brands. Maybe when its out of my system completely I will improve.
    Yes I have considered Paleo before but will look again.
  5. xchocoholic

    xchocoholic Senior Member

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    Interesting reaction to gluten. Do you have Hashimoto's ? I have Hashi's but "normal" thyroid hormone levels. I get mostly neuro reactions to gluten. I had gluten ataxia, problems walking and with balance, but that went away 1 year post GF diet. But I still get myoclonus and insomnia from gluten CC.

    I've yet to meet anyone who was completely gf at first. It's everywhere so it's hard to find it all. And then when you think you've got it, someone will change the ingredients of something you've been using for years. Hopefully you know about the lack of GF standards in the US. Manufacturers are working on the honor system here. There are a couple of gf certification companies mentioned on the web.

    From what I've seen it's rare for anyone to only be intolerant to gluten. Most common other intolerances are dairy, soy and corn and chemicals like hormones, sulfites and dyes. I actually know a celiac who reacts more to soy than gluten. Intolerances can be hard to spot too. I produce antibodies to egg whites but I don't feel anything if I eat these. I get shiners from dairy and phlegm immediately in my throat from soy. Mast cell / otc allergy meds seem to be helping these reactions tho. : )

    The Paleo diet has been recommended to celiacs over the years to help them heal. It eliminates all possible gluten sources. I did this for 5 years but recently added back in some gf breads, etc. So far so good, knock on wood.
    But, because I know about the CC issues, I'm slowly making my way back to paleo.

    Good luck with this ... X
    Karen O'Shea likes this.
  6. Karen O'Shea

    Karen O'Shea

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    Yes I have Hashi's but normal TFT's except one where my TSH was 9.4.
    I agree staying completely GF is very hard but I do my best. I know when I have been glutened as my thyroid swells visibly. The thing I hate most is that you just cant eat out, I am in the UK and have yet to eat out and not be glutened.

    My recent 23andme results show me I need to avoid high protein due to sulphur and I already avoid soy which can apparently aggravate my thyroid, although I haven't noticed this myself. I did cut dairy at one point but it made no difference and I cant afford to lose any more weight so back on this for now.
  7. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

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    Hi Karen,

    I think we share 6 of your "iffy" results - I am just learning about this stuff myself, so I have no input, unfortunately.

    One thing is clear though -- that even with a wide variety of testing and many consultations with various types of competent doctors (such as you've had), it still is quite hard to pin down what health condition(s) one has, what to do about it, and what the prognosis is. I don't mean for this to come across the wrong way, but that kind of makes me feel better about my situation -- while, overarchingly, I stress that I feel awful for us BOTH -- because I am in the US, unemployed, and with no medical insurance coverage, so I haven't been able to see a doctor about this (beyond getting basically fobbed off in years past about a legitimate thyroid problem and a longstanding, proven iron deficiency), but I know that I could go to a dozen typical doctors in my area of the country, spend thousands of dollars, and probably be none the wiser... the onus is completely on the (exhausted, scattered, dejected, drained) patient to try to understand what is going on by linking disparate fields of knowledge and esoteric nutritional approaches to come to some sort of coherent picture of what is happening. Sigh.

    You may have seen some of the links before, but I just put on my thread some of the main links that I've collected recently about this set of conditions/symptoms/genetic results: http://forums.phoenixrising.me/inde...hts-and-pointers-on-my-23andme-results.23837/

    Good luck :)
    Karen O'Shea likes this.
  8. xchocoholic

    xchocoholic Senior Member

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    Tx for pointing out that thyroid can swell from gluten. Mine is painful at times
    and feels swollen but i wasn't sure.
    I reread your symptom list and had a few more suggestions. Zinc may help metallic taste.
    Avoid aluminum foil and all canned foods.
    For insomnia melatonin 5htp and klonopin completely take care of my sleep.
    The klonopin can be substituted with theanine. I have nocturnal myoclonus
    So k works best. Unless your sleep study looked for this it may have been missed.

    Natural factors makes a combo supplement because these ingredients work
    well together.

    Also blood glucose problems can cause a lot of symptoms. My levels stay in
    the acceptable range but i have hyperinsulinemia. A gtt + insulin caught this.

    I'm typing on a new phone and i hate it. Sorry if my answers seem blunt. Tc .. x
    Karen O'Shea likes this.
  9. PennyIA

    PennyIA Senior Member

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    Just as an FYI - I've been lactose intolerant for years. And I didn't think I was gluten intolerant. UNTIL I went six weeks without any gluten and all my pain started to go away. Technically, I also started MTHFR treatments... but it wasn't OBVIOUS that I was intolerant of gluten. I tried a roll the other day and within two hours the pain started back up again... so... it was just that I wasn't getting an immediate, obvious reaction that I assumed I wasn't intolerant. I had experimented with cutting back with no differences, again, assumed that meant I wasn't intolerant.

    You might just be having some of your symptoms that seem chronic that are actually a low-level intolerance to something else. Something to think about anyway.
    Karen O'Shea and Valentijn like this.
  10. caledonia

    caledonia

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    I've been listening to the MTHFRsupport Blogtalk Radio podcast series. The one I'm listening to now, Feb. 13 with Dr. Amy Myers, covers this very subject. Apparently, gluten can cause autoimmune problems such as thyroid.
    http://www.blogtalkradio.com/mthfrs...aggregation&fb_aggregation_id=288381481237582

    Mercury can also cause thyroid problems.

    Low glutathione caused by low methylation can cause thyroid and pituitary problems. Methylation treatment can restore glutathione and thus their functioning. Mercury can cause problems with methylation. Methylation problems will cause more accumulation of mercury - thus, the vicious cycle. Restoring methylation will help detox mercury.

    It sounds like you have a lot of work to do to get this all untangled. What I suggest is first, get the gluten totally out of your diet. Have you been tested for celiac disease?

    Then start a methylation protocol starting with CBS. The Heartfixer page has a good CBS protocol. The only exception is to use the Free Thiol list instead of doing a low sulfur diet. The links are in my signature.

    With the twitching, restless legs and insomnia, you may also be low in magnesium and/or potassium, so I would trial supplementing with those.

    You might also enjoy the Methylation Made Easy videos (link also in my signature).
    Karen O'Shea likes this.
  11. Karen O'Shea

    Karen O'Shea

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    Thanks everyone for your thoughts/ideas. I had read that gluten can cause problems with thyroid etc and that's when i tried going gluten free and it actually worked quite quickly. I was tested for coeliacs disease but had been off gluten for two weeks at that point and therefore the test was worthless.
    Bluebell- I feel the same I am on my own with this in the UK. Even my GP is not really interested.

    Caledonia - I have started doing some of the CBS protocol I think it was from heartfixer site but will double check. The twitching/restless legs isn't too bad at the moment.

    I realized yesterday that my symptoms get much worse after anything sugary. I ate 3 gluten free chocolate biscuits and within an hour felt terrible. So I have now cut sugar and breads. Candida can apparently cause all my symptoms. I'll try anything to get better, although really struggling for breakfast ideas. Gluten free, sugar and yeast free, no eggs due to sulphur.
    Still awaiting hair mineral test results.
  12. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

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    Karen, it may not be the sugar in products like that which is negatively affecting you?

    I have never tried to go entirely gluten-free, but I have taken a look at the ingredients of a lot of commercially-produced gluten-free products in the UK and US, and I have been disappointed at what they contain:
    - flavor enhancers (I try to avoid MSG, and the various E-numbers that mean the same thing)
    - texture enhancers (including carageenan, which seems to be in nearly everything in the US -- I think that possibly it is not allowed to be put in foods in the EU)
    - products like tapioca (also known as cassava, manioc, yuca) and millet (which are heavy-duty goitrogens that are not inactivated very much, if at all, by cooking, and are not good for hypothyroid sufferers to eat), and flaxseed
    - heavy reliance on corn
    (and from Valentijn's post below: - soy - eggs)

    It is possible that it's some of those kinds of ingredients that are causing discomfort, and not the sugar.

    If enough is in the product, I react pretty quickly to MSG and related flavor enhancers - normally it's a strange mouth sensation and a headache, very rarely it's tummy discomfort and vomiting. (For example, a tiny single-serving bag of crisps that has any flavor whatsoever added, even salt&vinegar, which would seem benign, can give me an awful headache.)

    Of course, it's very hard to make bread-like, biscuit-like, cereal-like products that don't contain the typical grain ingredients, so they have to use complex concoctions of other ingredients to approximate the experience with gluten-free products.

    To avoid the ingredients I don't want, I realized if I had to go gluten free that I'd basically be making my own baked goods at home -- or just not having bread-y, biscuit-y, cracker-y things. :(

    I bought some coconut flour and almond flour and found a few recipe sites that look good, but I don't have my blood test results back yet, so I'm still eating folic-acid-free wheat/spelt/etc. grain products this week.

    ----
    some references for my assertions above:

    Tapioca (Cassava), Millet, Flax Seed/Oil

    "And probably the most goitrogenic food in the world is millet, and this could be a problem if people are getting rid of gluten and they start eating a lot of gluten-free bread that’s made from millet, for example. And millet basically inhibits every step of thyroid metabolism, and high iodine intakes cannot overcome the effect of millet.
    But again, if it’s a minor component of the diet, it’s probably not a problem, but when you’re compounding it with all of these other foods and a low iodine intake, that’s when it can really be an issue."
    http://chriskresser.com/chris-masterjohn-on-cholesterol-and-heart-disease-part-3

    http://thyroid.about.com/od/symptomsrisks/a/All-About-Goitrogens-thyroid.htm

    "...cooking partially inactivates the goitrogens, except in the cases of soy and millet"
    http://en.wikipedia.org/wiki/Goitrogen

    (note: cassava = tapioca, and is known by many other names like manioc and yuca)
    "The reliance on cassava as a food source and the resulting exposure to the goitrogenic effects of thiocyanate has been responsible for the endemic goiters seen in the Akoko area of southwestern Nigeria.[44] People dependent on cassava risk cyanide poisoning and malnutrition diseases such as kwashiorkor and endemic goiter."
    http://en.wikipedia.org/wiki/Cassava

    "flax seed contains cyanide which transforms into thiocyanate inside the body leading to hypothyroid syndrome"
    http://en.wikipedia.org/wiki/Goitrogen
    "Consuming large amounts of flax seed may impair the effectiveness of certain oral medications, due to its fiber content,[18] and may have adverse effects due to its content of neurotoxic cyanogen glycosides and immunosuppressive cyclic nonapeptides."
    http://en.wikipedia.org/wiki/Flax_seed#Flax_seeds

    ===
    Carageenan

    "Carageenan, a common and cheap food additive that comes from red seaweed, is used as a thickener and emulsifier in ice cream, yogurt, cottage cheese, soy milk and other processed food products. Based on results of animal studies, it has been tagged by some as an unsafe product that may cause ulcerations and cancers of the gastrointestinal tract. I think the evidence is compelling to avoid carrageenan in any product, and especially if you have irritable bowel disease."
    http://www.drweilblog.com/home/2011/6/4/does-carrageenan-raise-cancer-risk.html

    "exposure to carrageenan causes inflammation and that when we consume processed foods containing it, we ingest enough to cause inflammation in our bodies."
    http://www.drweil.com/drw/u/QAA401181/Is-Carrageenan-Safe.html

    Carageenan, The Natural Ingredient that's Wrecking Your gut
    http://www.rodale.com/carrageenan

    "Research links the controversial food ingredient carrageenan to gastrointestinal inflammation, including higher rates of colon cancer, in laboratory animals.
    ...Given its effect on gastrointestinal inflammation, Cornucopia urges anyone suffering from gastrointestinal symptoms (irritable bowel syndrome/IBS, spastic colon, inflammatory bowel disease, chronic diarrhea, etc.) to consider completely eliminating carrageenan from the diet to determine if carrageenan was a factor in causing the symptoms."
    http://www.cornucopia.org/carrageenan-2013/

    =====
    Corn

    “Maize is used as an alternative to wheat to elaborate foodstuffs for celiac patients in a gluten-free diet. However, some maize prolamins (zeins) contain amino acid sequences that resemble the wheat gluten immunodominant peptides… analysis indicated that other zeins contain similar sequences, or sequences that may bind even better to the HLA-DQ2/DQ8 molecules compared to the already identified ones. Results concur to indicate that relative abundance of these zeins,…may be of paramount clinical relevance, and the use of maize in the formulation and preparation of gluten-free foods must be reevaluated…”
    Plant Foods Hum Nutr. 2012 Feb 2
    http://celiacdisease.about.com/b/20...r-corn-cross-reactivity-in-celiac-disease.htm

    "...for many people a gluten-free diet isn't enough. Some grains that don't contain gluten, such as corn, oats and rice, contain proteins that are similar enough in structure to gluten to elicit an immune response in people with CD or NCGS."
    http://www.huffingtonpost.com/chris-kresser/gluten-intolerance_b_2964812.html
  13. PennyIA

    PennyIA Senior Member

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    To be honest? This is the only way I was able to go gluten-free. I tried a handful of gluten-alternatives and found out I'm allergic to at least one (if not two) of them. I haven't been able to narrow it down yet.

    So, rather than introduce new symptoms due to allergies... I just avoided all pasta, breads, additive-full stuff, pre-baked stuff.

    After I get back to a more regular diet (currently restricted due to dental issues) - I'll start again by trying one thing at a time where I know all of the ingredients and try to figure out which items I'm allergic to and need to avoid.
  14. Valentijn

    Valentijn Activity Level: 3

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    The gluten-free stuff usually has soy and/or eggs, both of which make me swell up.
  15. Karen O'Shea

    Karen O'Shea

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    I'm having my fillings out on Friday, yippee! I've only got three small ones so he is doing them all together.
    I avoided all breads, biscuits, pasta, cows milk and cheese for a week and just felt worse. So am back on gluten free diet with above gluten free. Think I am having B12 deficiency symptoms again but was hanging on until I had my active B12 checked before I took a shot. Now done so will take a shot now.

    Can anyone explain VDR Bsm +/+ to me, my vitamin D is low, lowest 13.4ng/ml but last test up to 24 ng/ml.
  16. Valentijn

    Valentijn Activity Level: 3

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    VDR Bsm is the same as VDR Taq, except the opposite results are reported. So your VDR Bsm is really -/-, just as your VDR Taq is.
  17. Karen O'Shea

    Karen O'Shea

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    So no need to worry about vitamin D then?
  18. Valentijn

    Valentijn Activity Level: 3

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    Not based upon those genetic results at least :p More thorough testing might be a good idea though. There's people who know much more about this than I do, but the impression I get is that there's two types of vitamin D that should be tested, and one being low (or high) doesn't necessarily mean that the relevant levels are also low (or high).
  19. Karen O'Shea

    Karen O'Shea

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    Great thanks. I'm going to leave of the vitamin D for now as it makes me sick and concentrate on everything else first.
  20. Bluebell

    Bluebell More % Neanderthal than Adreno but less hairy :-D

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    Karen,

    As far as I know, being insufficient in Vitamin D is a big deal, and is very harmful to many systems in the body.

    I don't think you should discount it. It would probably pay big dividends in your health if you got it up to a level of sufficiency, or even better, to an ample level of Vitamin D that is best for health.

    Because you say that supplementing with D has been giving you problems, if you have a doctor (even a mainstream doctor), I would check with her/him about this, because I think it's considered to be pretty important. In some cases, they give Vitamin D injections, I think.

    I got test results back last week saying that my Vitamin D is low (low enough to be called "Vitamin D deficiency").

    For Vitamin D, 25-Hydroxy, my test papers say that (in the US system, anyway):
    Vitamin D deficiency is less than 21
    Vitamin D insufficiency is between 21 and 29 ng/mL

    There is another Vitamin D test for Vitamin D 1,25, and that measures something different. As Valentijn said above, one of the D measurements can be high and one can be low, especially in CF/ME patients. But whatever your result is on the D 1,25 test, your "insufficient" result on the D 25-Hydroxy is probably something that should be worked on.

    ====
    Note: I do not want to speak for her, but I *think* that when Valentijn said above that you don't have to be concerned about Vitamin D, she only meant that you do not have to be concerned about your genetic test results (+/+ or -/-) for the VDR ("Vitamin D Receptor") genes.

    She was NOT saying that your low level of Vitamin D in your blood results is okay for you to ignore.

    I had the same confusion in a thread conversation with her when she said that I don't have to be concerned about my Vitamin B12, and I thought she meant that my Vitamin B12 level was okay in "real life" ...even though she'd really have no way of knowing!, but after some more conversation between us, it conspired that she had just meant, as far as my genetic mutations for Vitamin B12 were concerned, that the mutations did not look terrible, and I didn't have to be concerned about the genetics of my B12 situation. She said that my actual levels of B12, and how B12 is being processed in my body (which seems to be, based on my symptoms, incredibly badly!) were another thing entirely from what she was talking about, and that they might well be big problems for my health.

    The actual state that your body is in (according to trustworthy tests, doctors' diagnoses, how you feel, and what your physical symptoms are) is more critical for day-to-day health than what your lifelong genetic tendencies are.
    helen1 and Valentijn like this.

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