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pricklypear1971 last won the day on December 13 2016

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  1. Yes, I know there are real serious adrenal diseases, but that wasn't the topic.

    You are all stating your opinions and experiences, fine. If taking something harmless helps you feel better, that is great. I can choose to want to see the scientific evidence that these things helped you. Do you have before and after lab work we could look at? I realize you don't.

    Feel free to discuss your treatments here. I have the right to discuss my opinion that I want scientific evidence and worry about people self-diagnosing serious illnesses.

    Sorry Gee Eff, I just wanted to express my concern about all the self-diagnosis and people who are getting taken by some of these practitioners.

    Karen, I do have labs. They even came from certified mainstream labs. I have a few witchy labs, too.... They're cross verified with mainstream labs. I don't have to prove a thing to you.

  2. Thalassemia will not respond to iron and iron over load can be dangerous if given and not monitored. On your CBC lab tests, anything out of range? My red blood cells are tiny: mcv,mch,mchc and are all out of range (entire life). The good news is that my body does compensate for having a low hemoglobin (just below range) but when it really gets too low from low iron stores (that is from celiac disease) and I feel the effects: fatigue, out of breath.


    Thal can go the other way. You can have high rbc, low almost everything else and good or high iron. If a doc runs a "basic" cbc s/he may assume you are anemic, when you really are overloaded or fine on iron.


    My son is fine, my husband is overloaded. Life just got interesting around here.

  3. I don't care what it's called. You can call it When Pigs Fly Up Your Butt. Whatever. I worry about cause and effect for my treatment.


    My experience runs along the lines of a hypo thyroid/underperforming endocrine system state changing to a steroid induced hyper adrenal state - my symptoms were Cushings-esque, coupled with unaddressed and untreated Celiac Disease, along with under treated Hashimoto's - and that's what I'll address.


    What I deal with is a type of adrenal insufficiency brought on from the above factors (steroids, thyroid). Since I had undiagnosed Hashimotos for at least a few years prior to treatment, I suffered from a decreased endocrine system performance (hypo) http://www.emedicinehealth.com/anatomy_of_the_endocrine_system/article_em.htm. Two steroid shots and a round of oral Prednisone, along with topical steroids put me into a hyper adrenal state and I had Cushings symptoms. At a certain point, the hyper functioning of my adrenals changed to hypo - I now have some symptoms of Secondary Adrenal Insufficiency. This problem seems to be strongly tied to my thyroid - as my thyroid performance improves via correct medications and supplements my adrenals improve. As a matter of fact, I'm a point now where we're trying to determine if I am on too much thyroid med (of the wrong type) or too much adrenal supplementation. Figuring it out is a mix of labs and trial/error. I sincerely hope that I am able to come off adrenal cortex in the near future, as does my doctor. 


    For those of you who argue about if "adrenal exhaustion" is real or not, I think you need to drop the semantics and dictionary debate and pay attention to what people are saying when they talk about what's going on. The main adrenal-related complaints I hear about from people (and keep in mind I talk to lots of thyroid as well as gluten intolerant people) center around thyroid performance, glucose stabilization, and temporary sleep disturbances. I really don't recall anyone just saying "Hey, I feel off, I think I have Adrenal Fatigue so I'm gonna go buy a supplement at the store".


    I agree with this 100%: http://www.hormone.org/hormones-and-health/myth-vs-fact/adrenal-fatigue. As a matter of fact, the first thing I advise is a thyroid panel.


    Doctors urge you not to waste precious time accepting an unproven diagnosis such as “adrenal fatigue” if you feel tired, weak, or depressed. If you have these symptoms, you may have adrenal insufficiency, depression, obstructive sleep apnea, or other health problems. Getting a real diagnosis is very important to help you feel better and overcome your health problem.



    I have received medical advice, I think I know all of the diseases I'm dealing with....and have decided to go forward with a treatment plan that includes adrenal support. 


    I would like to address some specific remarks I feel that were aimed at my posts.



    Karen, sure...self diagnosing is dangerous with any disease. It's my experience most people try to get medical help for endocrine issues and are turned away - thyroid and adrenal. Kind of like with Celiac and NCGI. My range of doctor experience with adrenals is as varied as my experience with thyroid and gluten. To summarize, most MD's will acknowledge an issue but not treat it. Most ND's will acknowledge and treat with various treatment plans/supplaments.
    Irish - we all understand you had terrible luck with doctors of all types, and the only thing that was ever wrong was Celiac disease and stupid doctors until you also figured out you have MCAS.
    For many of us Celiac is not the beginning and end of our issues - it's just a piece. A good number of us have legitimate issues with other body systems that are not instantly (or ever) cured by going gluten-free: our lack of cure isn't due to our lack of compliance with a gluten-free diet, or vitamins. Neither is it our overindulgence of gluten-free processed foods, or lack of patience.
    The links I provided clearly outline the role adrenals play in health. I understand you don't see "adrenal fatigue" written out. What you have to understand from reading is that adrenals are part of the endocrine system - an important part that can luckily be manipulated and supported. Using myself as an example, I boost  adrenal performance with adrenal cortex the same way I boost thyroid performance in my severely underperforming thyroid.


    The debate about "adrenal fatigue" has been going on for decades. Bottom line - some people need to address their adrenal performance to improve the function of the endocrine system - temporarily or permanently.


    Cushings Syndrome: http://www.endocrine.niddk.nih.gov/pubs/cushings/cushings.aspx

    Addison's Disease: http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx


    Other names for adrenal fatigue are non-Addison's hypoadrenia, sub-clinical hypoadrenia, hypoadrenalism, and neurasthenia. http://thyroid.about.com/cs/endocrinology/a/adrenalfatigue.htm


    And I thought this was incredibly interesting. I'm going to go eat another Brazil nut, now. http://www.ncbi.nlm.nih.gov/pubmed/24437222

  4. Did they test thyroglobulin or TPOAb?

    Thyroglobulin is not used to dx Hashis.... http://labtestsonline.org/understanding/analytes/thyroglobulin/tab/test/

    The TPOab is used to dx Hashis Hypothyroidism. http://labtestsonline.org/understanding/analytes/thyroid-antibodies

    You need to understand if they ran the correct thyroid antibody test.

    You can have inflammation from ANY autoimmune disease. Since you know you are hypothyroid, I'd pursue that AND your gluten intolerance....

    You should probably read this about Fibro/thyroid: http://c.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/nov/11/fibromyalgia-indisputable-proof-claims-uk-research/

    Your high cortisol may be the effect of poorly managed thyroid. You may need more, or different thyroid med. you really need free t3, free t4 and reverse t3 to see what your thyroid hormone levels are and if you are utilizing the meds properly. You may need an adrenal support supplement or lifestyle modification/change to help lower your cortisol.

    And finally, if you haven't been gluten-free to Celiac standards:observing gluten-free to prevent cross contamination, etc., you could try cleaning up any remaining gluten to see if you feel better. I mention this because some people who are unsure of their status don't observe strict standards. I'm not saying you don't....

  5. For sure this can happen with steroid use. I'm thinking it may be part of my ongoing issues. I have been on oral steroids 5 times in the last 1 1/2 years plus had shots plus had it through my IV (my asthma was very bad and very difficult to control) after this cardiology testing is done, if it doesn't show anything, my GP is referring me to an endocrinologist for a complete work up. Now they never mention "adrenal fatigue" which I do agree with Karen may be a term used in alternative medicine, but I could very well be suffering from true adrenal problems

    MD's don't say 'adrenal fatigue', they say something like 'temporary overstimulation' or 'not functioning as well as it could, but nothing to worry about'. Or 'temporary side effect of x med or condition'. Then they shove another med down your throat or say "everything looks normal, go see a shrink".

    I will not argue that some alternative docs are wack jobs.... And some are fabulous. I could say the same for MD's. Of course, my view is probably skewed because I live in Thyroidland...and must MD's are in denial over the latest research (long story of what 'standard of care - unrevised' can do to a huge group of patients).

  6. I see people self diagnosing with " adrenal fatigue" a lot on here. But I would urge some caution.


    Adrenal fatigue is a term applied to a collection of nonspecific symptoms, such as body aches, fatigue, nervousness, sleep disturbances and digestive problems. The term often shows up in popular health books and on alternative medicine websites, but it isn't an accepted medical diagnosis.

    A true adrenal insufficiency sounds like a serious disease but not what most people here are usually talking about


    Karen, I assure you that many of us, especially with thyroid conditions, have overtaxed adrenals.

    I didn't believe it either....but I'll be damned, the support stuff I do and the supplaments I take DO make a difference. Now, do they make a difference because "stuff" is off - hormones, glucose, thyroid, etc. Yes. But while you work on those things (and sometimes boosting both is necessary long-term) you better bet adrenal support can make you or break you.

    Adrenals just don't produce adrenaline....they produce hormones. Post menopause they become even more important.


    And here's an article geared towards thyroid patients. In my case, I've had steroid shots/pills which negatively affected my adrenals. I was stuck in an overstimulated state for almost a week. I'd get flashbacks/surges/attacks when emotionally upset up to six months after stopping the steroids. Was it Addison's? No. But it was bad. I still have effects. Of course, being gluten-free has helped but the best help was getting on the right track with my thyroid. I hope to get off adrenal support at some point....


  7. I take oral dhea - a very low dose. Much lower than most supplament strengths you see at health found stores.

    I use progesterone cream half the month.

    I take adrenal cortex - two big pills. Timing depends on how my cortisol runs...when it peaks.

    One of the biggest factors for better adrenal performance for me is a minimum level of t3, along with a good ratio of rt3. Then, not fasting - eating sufficient protein with meals...and eating them on time. And finally, sleep. I need 7+ hours/night.

    My vitamin levels are improving, my adrenals have improved as they've improved, also.

  8. TSH is useless for thyroid diagnosis and treatment , apparently, in your case. You need free t3, free t4, reverse t3 labs. And run ALL thyroid antibodies, again.

    How are your vitamin levels? If you are low in iron, b's, d3, selenium, chromium your thyroid may be underperforming because of deficiencies. Deficiencies go with celiac and thyroid....they say thyroid because hypo people produce less stomach acid so food doesn't break down well. I've never been able to understand if those people are also celiac....sigh.

  9. Celiac diagnosis came first for me many years ago. Slowly but surely I'm adding more autoimmune diseases like Hashimotos. Fibro is also a new diagnosis not sure if its an autoimmune or not. So far Hashi's and fibro have been the hardest to manage and get back to feeling good.

    I've had significant fibro pain relief by avoiding the nightshades foods (tomatoes, onions, peppers, eggplants, etc). After reading an article about how those foods shouldn't be eaten by people with arthritis I removed the foods to see if it would help. Huge difference for me in reduced joint pain and swelling. I still get the tingling feeling but hoping that will disappear one day soon.

    For those of you that also have thyroid problems, try asking for T4. I've had my thyroid removed years ago and I still have significant problems, lost my job, etc. My doctor recently added Cytomel (T4) to my regular dose of synthroid and I've noticed a significant improvement in my overall health.

    Cytomel is synthetic t3, Levothyroxine is synthetic t4.

    And yes, some people need quite a bit if t3 if they don't convert t4.

  10. I have issues raising my iron, also.

    I didn't know this, but tea and coffee (without milk) can interfere with iron absorption when ingested within an hour or so around a meal/supplament.

    I started taking my iron last thing at night (stomach is almost always empty) with a small amount of oj or lemonade. I hope it's helping.

    Oddly enough, I am getting a crash course in iron, iron content of foods, absorption, etc. I admit to being surprised at what I'm learning....

  11. My son is 17 y/old. Whenever he does eat at school, it's a gluten-free pb&j made at home...and he eats separately from the other kids (to keep out of their crumbs).

    The jars of mayo/miracle whip are all considered glutened. I only use squeeze mayo for any gluten-free cooking. The tubs of "I can't believe it's not butter" are either unmarked (for rest of family) or it has "Gluten Free ONLY" written on it (which, in that case, I'm the only one to use it).

    Turns out the kitten chow does have wheat...so DS & I don't mess with her food anymore. As for the adult cat food, it was poured into the bin & we have no idea about it's gluten-state (so, DS washes his hands as soon as he's done filling up their dish).

    My son & I *have* lived our lives for the past year-with the Celiac being a "mindful" thing, NOT Full in our mind. It's just that the fact DS still has antibodies a year on, it means he's been continually exposed to gluten. Not a good thing.

    He wouldn't be the first to get whammied by pet food. I'd put the pets on gluten-free food.

  12. I found Maseca at a store here...I see a "gluten free food" label on it but not a certification or line declaration. Did you call them? Anyway, I'm happy to hear others are having success with it.

    I don't cook my tortillas on cast iron - I have this huge flat skillet that is perfect for tortillas and pancakes and such. I think it's anodized?? I agree nonstick is not the best choice - can't get them hot enough.

    I may try making my own. Fresh tortillas are divine....I just don't eat enough at once to justify the effort. My son is the main tortilla hound and he definitely appreciates the convenience of the Mission tortillas.

    Try drizzling with honey. One of my faves.

  13. If the house of gluten-free except for takeout pizza, etcetera you should look into if people are bringing in gluten foods on the sly. My son does it (did it?). He'll shove half eaten bags on gluteny pretzels on his backpack (backpack goes on kitchen table, homework and crumbs pulled out together) or bring gluteny candy in the house and dump wrappers all over (including crumbs). I've found bags of chips in his jeans....crumbs falling out of pockets. I did get hit once this way - he was doing quite a bit of this and I cracked down on it.

    In the beginning things are weird, but if you think you're getting glutened it's worth looking into. Of course, as Mom I have more authority than you do when it comes to handing down rules and consequences at home.

  14. It's so refreshing and reassuring to find yet another physician so poorly informed about Celiac Disease, NCGS, and the spectrum of autoimmune inflammatory diseases that can be helped by eating gluten-free.

    Especially interesting coming from a cardiologist. You'd think he'd read some research on heart disease, inflammation, and the effects of diet on inflammation.

  15. Yes, a dishwasher (or dishwater, depending on what, how) can gluten you. We have very hard water and a relatively new dishwasher. We struggle to keep the buildup out - and a good coating of gluteny delivery pizza (no cooking in my house) got me via the dishwasher. As I've become more sensitive I've learned I can't put gluteny dishes in the dishwasher that aren't already washed (soap/water/paper towel).

    I run a terrifyingly strict gluten eating arrangement. It is delivered, you eat on paper towels, you put your glutened stuff in the trash, you get up and wash in bathroom with soap. You don't touch anything. I watch. We really aren't a mixed house. Take out/delivery is my limit.

    It was the dishwasher. I put the dishes in with some pizza grease/cheese stuck on it (probably crumbs) and I got whammied. Hasn't happened again since I started washing gluten dishes prior to going in. Even beer glasses. I didn't stick anything in that wasn't in compliance with manufacturers instructions or that hadn't previously been cleaned off before.

    Wasn't always this way. We do fight the crud and buildup in our dishwasher and washing machine. If you have softer water I'd guess it would be easier.

  16. They classify MS as an autoimmune disease. I wonder if the meds used will affect Celiac testing. As an example, steroid use can cause false negatives in celiac testing.

    As NoGkutenCooties stated above, NCGS is an explanation - and there aren't any tests other than a gluten-free trial.

    I guess the questions is - why does your doctor think this? Have you tried a gluten-free trial? What happened? Gluten ataxia, neuro is one of those cutting edge areas. There are a few on here with experience, I hope they chime in.

  17. I've found all locations are different. One I ate at regularly is awesome. No touching spoons to tortillas, always change out everything, pull new bins....never been cc'd. Another is okay...I think they could handle the spoons to tortillas better but I've never been got. A third one - holy Jesus. Bean (on flour tortilla) juice dripping back into the bean bin, no gluten free education, spoons touching everything....I refused to eat there, pulled the manager aside and told her my thoughts. Haven't been back.

    My advice is to talk to the manager, insist on fresh pulls, and watch what happens in the line before you order. Don't be afraid to walk away.