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burdee

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burdee last won the day on June 26 2010

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  1. My pain that I have had for many years is gone after I quit gluten but not the constipation.  I have some other intolerances - dairy, peanuts and egg that I have taken out of my diet but that has not helped the constipation either.  I have tried various forms of fiber and now take miralax which works but I really don't have "normal" bms with it. I generally don't go without using something.  I really see my constipation get worse with eating gluten-free bread and pasta which I woke up this morning thinking rice may be the problem.  Any ideas?  I love pasta but use it in moderation already.  I feel like I will never gain or even maintain my weight if I take out rice products.  New gastro only pushes FIBER and more FIBER.....

     

    There is a good possiblity that it could be autoimmune related as I have a positive ANA and may have some sort of lupus thing going on.  Thyroid is normal.  Being constipated is so depressing.  What are your thoughts on rice?

     

    Thanks

    Renaye

     

    Which thyroid test results convinced you that your thyroid is 'normal'? Did you test free t3, free t4, TPOab, as well as TSH? What was your doc's normal range for TSH? 

     

    I struggled with constipation for years. Abstaining from gluten and my other 6 allergies helped somewhat, but I wasn't normal. Other digestive aid (betaine hcl for hypochloridia) eliminated bloating after eating.  Taking Magnesium aspartate insured a daily bowel movement, but I still didn't have normal stools.  Only after I was dx'd with Hashimoto's hypothyroidism and another year of getting the proper dose of thyroid supplement did I finally have normal stools, no matter how much fiber I consume, no matter.  I still take magnesium, but more for bone health than laxative effect.  I can also get diarrhea if I eat too many grapes or too many sweets. I never got diarrhea before thyroid supplements. 

     

    Besides constipation, I had all the classic hypothyroid symptoms: fatigue, fingernail ridges and tears, feeling cold except in 80 degree weather, feeling overwhelmed by simple tasks, etc.I didn't have weight problems, because I had digestive difficulties for years before dx'd with celiac, food allergies and hypochloridia (low stomach acid). Do you have any of those classic hypothyroid symptoms?


  2.  

    Most of us have more food allergies than just wheat, barley, and rye but I feel like one of my allergies is kind of strange and I haven't met anyone outside of my family that has it. I'm allergic to cinnamon, have been since I was 20. I never had a problem with it when I was younger and made a lot of desserts with it because it helps keep away illness. Is any one else allergic to Cinnamon? I wish I wasn't, I have gotten used to not eating it but the smell is so yummy! Even if it does make me sneeze and my face itchy :-/

     

    I have a diagnosed allergy to nutmeg. Like most of my other delayed reaction allergies, consuming nutmeg gives me days bloating and gut pain and sometimes diarrhea.  Many people have spice allergies.  I'm also allergic to vanilla.  I'm still recovering from my last accidental ingestion, which caused all the above mentioned symptoms.


  3. Are you saying, Burdee, that you were diagnosed about the time that your enamel came off your teeth?

    That would be great!

     

    Nope. I was diagnosed with celiac disease many years after I suffered enamel loss. My dentist and doctors all decided that I caused the enamel problem, because they decided I was bulimic and made myself throw up.  Actually I had thrown up often in early childhood. My mother decided I had 'stomach flu'.  My childhood dentist just repaired the teeth with enamel loss without considering a cause.


  4. Another common consequence of (or correlation with) celiac disease is autoimmune disorders.  One of those disorders is Hashimoto's thyroiiditis or low thyroid levels, which impair many metabolic functions. Common symptoms are fatigue, low blood pressure, low body temperature, difficulty losing weight, hair loss, and constipation.  Many docs overlook, misdiagnose or discount hypothyroid symptoms.  The usual test for hypothyroidism is a TSH level test.  TSH is a pituitary hormone which is inversely related to the amount of thyroid hormones in the blood.  However, the amount of thyroid hormone in the blood doesn't tell how much of those hormones actually enter the cells and regulate many metabolic functions.  So you could have a 'normal TSH level' and still have hypothyroid symptoms.  Also many docs and labs continue to use outdated TSH 'normal' ranges, which allows many people to go undiagnosed. 

     

    Long story short:  Your metabolism could have slowed down because of hypothyroidism.


  5. I am 73, DX 4 1/2 years ago. I had a very bad episode of throwing up at one year gluten free, and another at 2 year from accidentally eating gluten. It was terrible, get the bowl type of thing and when that happens you are very carefull not to have it happen again. Well last night it happened again and I was so sick. At 4 pm I had eaten some canned beef stew with rice. The can said gluten free. Then my granddaughter and I went to do some shopping.I had seen a repeat DR.Oz show on supplements to keep you young, which my 17 yr old granddaughter said, "well that train has left the station" nice kid :) Anyway  I got a bottle of 400mg Astragalus and took one when I got home at 7:30ish. I was feeling not to good by10:30 and went to bed. The miniute I layed down I knew I was sick. I had 2 bouts of the bowl, and finally got to sleep. The supplement does not list anything with gluten, but to be that sick, I just wondered if anyone has had any experience with this. $10 bottle that I am affraid to try again :(

     

    I've never taken astragulus, because my ELISA (allergy/intolerances) test results for herbs and spices showed that I had a very strong IgG mediated reaction to astragulus.  That reaction was stronger than any other of my diagnosed allergens.  I've had obvious reactions after accidentally consuming my other diagnosed allergens. So I adamantly avoid astragulus.  Bottom line: You could very well be allergic to (or intolerant of) astagulus. 

     

    Many people who are diagnosed with celiac disease later in life developed other allergies/intolerances during the time they had undiagnosed celiac disease.  I wasn't diagnosed until age 56.  Subsequent tests showed I had 7-8 other allergens.  All those diagnoses were verified by my experiences with those foods, herbs and spices. 


  6. Yesterday, I handed my dentist the paper about a connection between celiac and damage to tooth enamel.  In doing so I am hoping that many of his patients will discover they have celiac disease.  I would encourage others to do the same by printing off a copy and giving it to their dentist.

     

    While I sat in the dentist chair yesterday, I analyzed just how long ago I could have been diagnosed if   the dentist knew the tooth enamel connection with celiac back then.  I lost the enamel off my teeth when I was 17 years old.  I got diagnosed when I was 48!  That makes my ignorance 31 years longer.

     

    http://www.theglobeandmail.com/life/health-and-fitness/health/conditions/tooth-damage-may-be-a-sign-of-celiac-disease-dental-professionals-told/article12346685/

     

     

     Could you recall how much sooner you could have been diagnosed if the tooth enamel/celiac connection had been known earlier?

     

    D

     

    I wasn't diagnosed till i was 56.  My dentist saw the enamel damage, asked me if i threw up. He decided I was buiimic, because i was thin and threw up.   He didn't ask if I threw up to get/stay thin.  (I had terrible reflux and nausea after eating certain foods, to which I was later diagnosed with allergies and celiac disease.)  When I told my doctor that i threw up after eating certain kinds of foods (usually baked goods), she also decided I had an eating disorder and suggested I see a therapist.(My allergies were later diagnosed as gluten dairy, egg, soy, cane sugar, vanilla and nutmeg, contained in many baked goods.) When I told my therapist that I didn't force myself to throw up, but i had gut pain and nausea frequently, she told me to talk to my doc about those symptoms.  My doc had already put me in the bulimia box.  Several years later, she told me my symptoms were caused by IBS, that everybody over 40 gets that and I should learn to live with it.  I also had hypothyroid symptoms all my life (cold, low blood pressure, low pulse, constipated), but was not tested for hypothyroid,, because I wasn't overweight.  Likewise I had celiac symptoms (short, thin, bloated belly), but wasn't tested for celiac disease because I didn't have diarrhea.  Instead I had constipation, caused by Hashimoto's thyroidiitis, an autoimmune condition correlated with celiac disease. 

     

    I just wish more docs could think outside the diagnositic boxes they learned in school or were given by their HMOs.


  7. I have been gluten free for 9 months!  1 year scope coming September and cant wait to see if I am healing................ After close to 30 years of being ill and low weight. Finally told I have Celiac and I am not crazy!  I am 5'4" and hanging on to 112............ I know I am very careful, not gluten in my home, all makeup, soaps, shampoos I try my hardest to be gluten free.  But I need to know please, is it "nornal" to still have days of diarrhea? bloating like I am pregnant even after a glass of water at times?  My GI also told me I have IBS, along with most of the world.....when I stress or anxious the same day or a day or two later I will have diarrhea......could very well be my nerves.   I do have to say that I am most definitely a lot better then I was 9 months ago, and my husband reminds me of that when I start to feel low about the days I have diarrhea and bloating or cramps.....it always seems to come in waves ........ feel good......great.....then days when I need an imodium and no matter what I eat I have diarreha!!    Does anyone else understand or going through this?  I mean I can have quinoa for breakfast, green tea then cramp and gotta poop.......weird!   It makes me worry and scared that I am not getting better or I am slowly dying.....sounds dramatic but somethimes thats how I feel.    Please help ........ anyone? :(   thanks!

    If you're not ingesting any gluten, then you need to consider other possible allergens (or 'intolerances' for people who don't consider delayed reactions allergies). I was not diagnosed with celiac disease until my 50s after a lifetime of symptoms and misdiagnoses.  During that time all the gluten damage to my intestines helped me develop allergies to many common food ingredients. An ELISA blood test and another Enterolab test diagnosed my 6 additional allergies.   Those test results were confirmed by my reactions after abstaining from and then eating the diagnosed foods.   

     

    Also you might consider gut bugs, like bacteria, parasites and/or yeasts (like candida).  I was diagnoed with (stool tests) and treated for 8 different gut bugs over a 4 year period.  Then I learned that low stomach acid allowed food born bugs to go to my intestines and proliferate.  So improving my stomach acid also improved my digestion (eliminated gut cramps, reflux and indigestion).

     

    I'm not saying that you have anything like i had after years of undiagnosed celiac disease.  However, you might consider other causes of your symptoms, if you know you're not getting any gluten.


  8. Ditto Burdee. I had C my entire life. I discovered my celiac disease and thyroiditis at the same time.  As my thyroid dosing got closer to ideal point, my BM's happened with much more frequency. I'm not sure it was due to my thyroid meds or the fact that I had been gluten-free for 9 months.

     

    Prior to that, fibre did very, very little for me. I would mix fibre into water a few times a day, and take 2-6 fibre tablets, of two different types, twice a day. Heck, I ate prunes.  LOL I hope you find something that helps.

     

    I was gluten free (and abstaining from my 6 other diagnosed allergies) for 6 years and still struggled with constipation.Then I was finally dx'd with Hashimoto's. It took over a year for me to realize that I didn't do well on any T4 meds and switched to T3 only meds with my doc's approval. After that I was regular withmuch less magnesium and fiber. However, when I need to increase my dose, I still cn get irregularity which is unmitigated by magnesium or fiber. I can't tolerate laxatives which contain sorbitol, beause I get horrible cramping pain from those.


  9. I had chronic constipation for years. I tried all the recommendations for more liquids, more fiber, magnesium, exercise, everything except laxatives, which caused cramping pain.  6 years after I was diagnosed with celiac disease, i was diagnosed with Hashimoto's thyroiditis (autoimmune hypothyroid), which is highly correlated with gluten intolerance.  After I reached a stable dose of thyroid supplement, I was regular every day, no matter what I ate. However, I had to take the thyroid supplements at least an hour away from magnesium (and iron, which I don't take) and 30 minutes away from meals. Irregularity is a common symptom of hypothyroid. So, if you've tried all the other regularity remedies and still struggle, consider getting a full thyroid panel (free t3, free t4, TPOab and TSH, which is not as important as the first 3 tests).


  10. It has been so long since I've been glutened that I hardly remember what it was like. Thank goodness for that! Unfortunately, I ate a handful of nuts (the first food I gave up back in the 90s). It has been a three-day drag so far. Many symptoms are similar to gluten but not as pronounced. Also, there is not much emotional disregulation as there typically is with a glutening. What IS there is the fatigue, heavy arms, muscle burning, numb knees and arthritis that typically accompanies the gluten reaction.

    The nuts were made in a factory where flour is used which could be a consideration.

    Does anyone else have 3+ day event after eating foods (other than gluten) to which they are allergic? Is there any proof that this reaction to other foods is due to leaky gut and, therefore, may disappear as the gut repairs over time?

    So far, the best I've felt is on a Paleo diet (no grains or legumes). It's a restrictive diet but worth it to feel that good. However, I really am curious if any of you have experienced a reduction in food allergies after being gluten-free for some time.

    Thanks,

    Cali

    Yes, I have 6 other diagnosed food allergies besides gluten.  I also have 3+ day (actually 1-2 week) reactions after consuming any of those foods.  I've been gluten free for 9 years, but i still react just as severely to my other diagnosed allergens. Actually, like gluten, the longer I abstain from those allergens, the more severely and longer I react. 

     

    I suspect leaky gut, caused by gluten antibody damage, originally caused those other allergies. However, even after my gut heals (or healed?), the antibodies to those foods will still be in my blood. My body's immune system won't forget how to react to those foods. So the bad new is I will probably always react to my diagnosed allergens.

     

    The good news is that I found tasty substitutes for all my allergens (which are usually ingredients in most processed foods and baked goods).  I don't miss any of my allergens, because I can make the foods which contained my allergens, without my allergens, but with safe substitutes. (That will make more sense if you look at my list of allergens.) Of course, I only eliminated my diagnosed allergens. So I can eat anything to which i don't react.  Getting an accurate allergy test was so much easier than trying to figure out my allergens with an elimination diet.


  11. I'm sorry that i just discovered this post. Hopefully you already learned that the Paddock T3 brand is safe for you. I've been taking Paddock liothyronine since 2011.  i've been on a T3 only regimen since 2012.  I'm sensitive/allergic  to gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg. I haven't reacted to Paddock T3 tablets since I started taking them. However, the lower dose tablets (esp. 5mcg) contain a higher proportion of cellulose than the higher doses.  Some people have problems with cellulose. I never did.  I hope you're doing well on T3 only now.


  12. I'm prescribed high-energy supplement drinks (I have complex malabsorption issues and pancreatic failure) which are really sugary.

    Anywho, after I have these drinks I quite often feel dizzy/sick and get mild heart palpitations/tachycardia. Even when I sip them really slowly.This happens with sugary food as well.

    They're definitely gluten-free so it's not a coeliac reaction.

    Is it common for sugar to have this effect on the body? :/

     

    I don't think that effect is common. HOWEVER, I experienced heart palipitations and mild tachycardia after eating sugar for many years. Then I took an ELISA  (enzyme linked immunosorbent assay) blood test for food allergies.  I had a very high IgG mediated reaction to cane sugar. So i started avoiding cane sugar. i could still eat honey, beet sugar, agave, etc., almost any natural sweetner except cane sugar. The palpitations and tachycardia disappeared ... until I accidentally consumed some cane sugar (e.g. Tylenol or products which changed their ingredients by adding cane sugar).  So you might actually have an allergy (IgG or IgA mediated) to cane sugar.  Try avoiding all sources of cane sugar and see whether your symptoms disappear.  You'll have to carefully read labels. Cane sugar is widely used in processed foods.


  13. I guess I should be happy, a little over two years ago, before I went gluten free, my thyroid antibodies were high.  They never did anything about it at the time, however, I was having some symptoms I thought could be related to hypothyroid.  They checked the antibodies again, and the are within normal range.  I am still having problems that I would like to figure out, but maybe being gluten free for two years has helped stop me going into hypothyroid!  Thanks for listening

    Sarah

     

    I've been gluten free since celiac disease dx in 1994. After years of hypthyroid symptoms I was finally dx'd w/ Hashimoto's hypothyroidism in 2009. My first TPOab (antibodies) were at the top of the normal range. 2 years later they are low normal. I agree that avoiding gluten helps eliminate the antibodies. However if you had hypothyroid symptoms for years before diagnosis (and going gluten free) you may have sustained enough damage to your thyroid gland that you will need thyroid supplements.  I feel soooo much better with an effective dose of thyroid supplement. No more low blood pressure, low body temperature, fatigue, constipation and lousy fingernails.


  14. Its been a year or so since my last stool test so i just had one and got the results today.  not much has changed, still have dysbiotic bacteria..enterobacter clocae is the predominant one and also have alpha-hemolytic and beta strep which is odd cause i thought those were respiratory infections only.  Lactobacilli is low as always (+1) and bifido is non existent.  any idea why i cannot colonize abundant levels of the good bugs?  my ND says he usually sees high levels in most of hist patients.  im concerned that this is impairing my GI function and will make me susceptible to colon cancer or other diseases.  also under the parasitology/microscopy section it said small amounts of yeast were found and RBC's (rare- not present) which ive never seen before. could use some feedback - im honestly sick of taking these tests and my ND has no idea what to do with me anymore but he certainly wont turn away my business thats for sure 

    Low good bacteria is one explanation for continual dysbiosis. Are you still taking  high dose probiotics? (I'm still taking the Custom CP-1 formula, which you recommended.) After my history of 8 different gut bugs over a 4 year period, I left my previous ND and asked a new ND to figure out why I got recurrent gut (and respiratory) infections.  For me low stomach acid production, low levels of Vitamin D, Hashimoto's hypothyroidism, low white blood cells (esp. neutrophils) and low DHEA influenced my low immunity. Addressing all of those problems eliminated my gut bug problems and greatly reduced the number of colds for me.  Maybe you need to find a new doc who will actually look for causes of your continual dysbioses, rather than just test and treat (which my previous ND did).


  15. Hello!

    I am new to the forums, and I am nearing desperation...

    I've been gluten-free for over a year. I've been dairy free for about 4 months.

    After first going gluten-free I noticed a significant difference. My bloating and constipation disappeared within the week.

    Then about a year in I started to experience symptoms again. Then I went dairy free - but nothing is giving me the relief I had after first going gluten-free.

    I did notice that some of my hair products have wheat in them. But I feel like there must be something else that I'm allergic to. For example, jus tthe other night I had severe reaction after eating Trader Joe's Gluten/Dairy/Soy/etc. free brownies with almonds and cashews.

    And again today, I've eaten all clean foods and I'm reacting pretty significantly: eggs, onions, green onions, sugar, vanilla almond milk, EVOO, chicken, broccoli, and roasted potatoes, and iced tea...

    Is there another common allergen in what I'm consuming that I"m not seeing?

    Any thoughts or insights or suggestions would be greatly appreciated.

    Thank you!

    Don't assume any food is 'clean' or won' cause reactions. I react to eggs, cane sugar, vanilla and nutmeg (as well as gluten, dairy and soy). All my reactions were confirmed by the ELISA test and my experiences. You could be allergic/intolerant to almost any food. I prefered to spend the money on the ELISA test, rather than restrict myself endlessly to try to figure out what caused my symptoms. However you could try eliminating foods, but I can't recommend any 'safe' foods to start with.


  16. So I've done a few emails because I'm trying to find out if some things I liked prior to going gluten-free are still edible for me. I'll list what I can here, please contribute. please note that I personally do not have a sensitivity to cross-contamination, so take that into account.

    Dillettante Chocolate - this place sells pastries, they're the chocolate version of a Starbuck's. On the other hand, I was pleased to find out from their website that their delicious caramel sauce is gluten-free. So I can still have my caramel latte. No gluten-free pastries, though.

    Taco del Mar - they have a HUGE and comprehensive "allergen chart" on their website. I'd say a good 85-90% of the menu is gluten-free, which is awesome. Baja fresh mexican food!

    Specialty's - yes, it's a bakery, so I can't have any pastries/bread/etc. :( BUT an email to them confirmed that while the cross-contamination is a factor, there is no gluten actually IN their delightful mini-quiches. YUM.

    Red Mango - Red Mango frozen yogurt is all-natural, nonfat or lowfat, kosher and certified gluten-free. please note that the additions you can get for the yogurt may not be, as I know they have waffle cones and graham cracker crust bites. But the fresh fruit is sooooo good.

    Anyone else have any locations or singular items, especially in Downtown Seattle? (where I work)

    Thanks,

    Meg

    PF Chang's in Westlake Mall has an extensive gluten free menu. I have celiac disease plus diagnosed reactions to dairy, soy, egg, cane sugar, vanilla and nutmeg. PFC is so allergy friendly. If you ask the waiter for gluten free menu and mention you have other allergies, the manager almost instantly appears at your table to talk to about which entrees will work for you. I also carry a laminated allergy awareness list of my allergens, which I send with my waiter to the chef preparing myfood. If gluten is your only concern PFC will be easy for you.


  17. In addition to gluten, I can no longer eat corn, peanuts, sesame, watermelon, cantelope, and can only eat organic fruits. Any advice?

    Focus on what you can eat, rather than what you can't eat. I have diagnosed reactions/allergies/intolerances (whatever you want to call IgA or IgG antibody mediated reactions) to gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg. That pretty much eliminates most processed, ready to eat foods, and makes restaurant dining challenging. However, I found great allergy free cookbooks, which showed me how to substitute my allergen 'ingredients' in most recipes. I also tried many new foods which didn't contain my allergens. I found new 'favorite foods', which didn't cause the painful reactions which my old (allergen filled) favorite foods caused.


  18. Hi all....today I'm feeling a bit under the weather. My diet is gluten free, dairy free, I try to eat soy free and I can't have eggs. I have to eat low purine foods which means even some meats are off limits! I know there are others out there with a severely restricted diet....how do you cope? I know that the less often I eat these foods the better off I will feel but I don't know how to handle it right now. I feel really good physically and I've only been eating this way for about a month but sometimes I get psychological cravings too. So far I've managed to tell myself that feeling better is more important. Any coping advice?

    I was diagnosed with celiac disease and later reactions to dairy, soy, egg, cane sugar, vanilla and nutmeg. I know all those foods cause extreme pain and bloating, except cane sugar, which also causes nausea and tachycardia. I initially abstained to feel better. I eventually realized that all those restricted foods were 'ingredients', not just specific foods. So, when I changed the ingredients by finding substitutes for everything I can't eat, I learned to bake (with great allergy free baking books) and prepare almost anything I previously ate (before diagnoses). I'm lucky that most of my allergies are just ingredients which I can replaced in baked goods and other dishes. (I recently made gluten, dairy, soy free lasagne!) My husband has specific food allergies (blueberries, grapes, almonds, sesame), as well as some 'ingredient' foods. Nevetheless, even he learned to substitute other foods. We've discovered many new ethnic cuisines, which we previously would never have considered. He was rather 'picky' about what he ate, but allergy diagnoses forced him to try many new foods, most of which he likes. I was diagnosed later in life. So I figure that I spent enough years eating egg in various forms and cottage cheese, usually as part of 'diets'. Now i focus on all the foods I can eat, which I previously overlooked.


  19. I have not been able to find a mayo without soy, and started searching for mayo recipes.

    http://www.seriousea...mayonnaise.html

    This was super easy and the mayo came out great.

    Before I found dairy/egg/soy free mayonnaises (Earth Balance Olive Oil and Vegenaise w/ Olive Oil), I made mayo with raw cashews, lemon juice, honey and salt in the blender. It was not as good as the Earth Balance and Vegenaise dairy/egg/soy free versions, but I had something for sandwiches (and brocolli) until I found those 2 brands.


  20. Hi everyone!

    I'm just wondering if anyone has experience here with intolerance tests? I'm having trouble with my leaky gut which is making me intolerant to many foods and I am rotating and keeping a food diary, but I am still getting worse. I recently got a meridian stress test which tested for food sensitivities and it showed I was sensitive to all grains (including ones i haven't eaten) and it said I was fine with several things I swear I'm intolerant to like peanuts, dairy and bananas. I'm really confused! I'm scared my leaky gut will never heal because I can't tell what I'm intolerant to and I keep getting mixed info from everywhere!... The only tests for intolerances I have found in Australia are an elisa test that costs $800 and a hair test which I am not sure will be accurate. If anyone can help me with intolerance tests they've tried or recommend some in Australia or even internationally I would really appreciate it!

    I'm not in Australia. However, I have had 3 different panels of the ELISA test. The first (100 commonly eaten foods) found my cane sugar and egg intolerances (IgG reactions). I still had symptoms. So I took the vegan panel, but had no significant reactions. So I took the herb/spice panel and discovered I reacted strongly to vanilla and nutmegs. I'm soooo glad I used ELISA. My intolerances (IgG and IgA reactions) are all ingredients in baked goods and processed foods. I would have never guessed all those or even been able to isolate all those with elimination tests. Yes, I had to pay outa pocket, because my HMO didn't cover those tests. However, i consider those test results well worth the money, because that shortened my journey to health. I aIso had to endure 4 years of gut bug infections (8 total but not all at once) before I found an NP who tested me for hypothyroidism, which explained my other symptoms.


  21. My issues are severe enough that I'm not sure my ND is going to be enough. I had severe neuro complications. I'm not sure if Dr. Wangen can help me to the degree I need either. Part of me wants a celiac specialist from one of the centers to tell me that what I've been experiencing the past few years can all be attributed to untreated celiac. Even though I've found a lot of evidence, I'm having a hard time being confident that I can control and recover from what has happened in my brain. I keep thinking something else is going to come out as an issue that is undiagnosed.

    The other part of me thinks I have to be an example that a research center would want to document and understand... so I'm considering getting an appt and flying somewhere to a research center. Has anyone done that? Traveled to a specialist?

    What about Dr. Wangen here in Seattle? Does he know much about the neuro stuff? Or is he just good with the gut? I would go see him even though he doesn't take insurance if I could just get some guidance or reassurance...

    I sawDr. Wangen for 4 years while we tested for and diagnosed my 6 other delayed reaction allergies and testedfor and treated my 8 different gut bug infections. I looked for another doc when Dr. Wangen couldn't explain why I kept getting those infections. My current ND (Wendy Ellis of Tahoma Clinic North) tested me and discovered 4 different conditions that caused my immunity problems. I no longer get gut bugs or even respiratory infections. However, I still read Dr. Wangen's blog at http://www.ibstreatmentcenter.com and noticed that he learned a lot after I left 4 years ago. He seems very knowledgeable about all aspects, symptoms and complications of celiac disease. BTW his own experience with celiac disease during medical school motivated him to become an ND, rather than go the traditional medical doctor route. I for one am glad he did. I've never gotten anything bur misdiagnoses from traditional doctors.

    I suggest you call his clinic (IBS Treatment center) and ask the receptioinist whether Dr. Wangen can help your problem. If you're not satisfied, doctors at the Tahoma Clinic are very knowledgeable about food allergies, celiac disease, etc.


  22. I am glad to hear you haven't in two years, I guess I was unlucky and got a bad batch. It does seem very inappropriate for a company to advertise being free of things like dairy and soy, and then turn around and process them on the same equipment as those that they claim to be free of...usually companies list contaminants under the ingredients, this one did not. I hope they change their processes. I liked the price compared to the So Delicious brand and it tasted great going down. My daughter and I split the raspberry and we both reacted, we are both Celiac and are both tested through Enterolab. Good luck with eating it, I would imagine your luck will play out some day.

    Have you tested for other food allergies, esp. with blood tests? My husband is actually allergic to blueberries and grapes (IgG mediated delayed reaction allergies). You could be allergic to raspberries or another ingredient in Amande yogurts. I also tested for gluten intolerance (and soy) with Enterolab, but was dx'd as well by ELISA (blood) test for allergiesto dairy, egg, cane sugar, vanilla and nutmeg. I'm really careful about avoiding my dx'd allergeens. So I doubt my experience with Amande yogurt was 'luck'.


  23. Thanks burdee :). My previous eliminations have revealed caffeine, sesame, aspartame etc, alcohol, corn. I have always struggled with sugar, and find it hard to limit. This has been the case for several things I have excluded. I wonder if it is coming to the fore now the gluten has gone.

    I was chatting on another thread about the difficulties of getting blood tests in the UK. Many doctors seem sceptical, and sorting out the good from the others in private testing is tough. I am seeing a dietitian soon so I''ll have another go.

    Thanks for your input, never seems simple :)

    I 'struggled with' (felt nauseas and anxious) after eating foods with sugar for years. After I was diagnosed with cane sugar allergy and substitued beet sugar, honey, agave, maple syrup, etc., I realized the 'anxious' feelings were really tachycardia caused by my cane sugar reaction. I still get nausea and tachycardia if I accidentally consume cane sugar in a product. (That happened 2x last summer when trusted products changed their ingredients by adding cane sugar.) Before I was dx'd with cane sugar allergy, I told people that my heart raced after eating sugary products. They told me I just felt guilty about the calories. I never realized it was really reacting to the cane sugar with tachycardia. I suspect that if we listened to our own bodies, rather than listening to other people or reading 'health' propagana (often generated by the food industry in the USA), we could figure out our true allergies much more easily.