burdee

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.

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.

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.

Hi
I have had great improvements on the gluten-free diet but I have got a bit stuck. I think I have managed to gluten myself 5 times in 6 weeks. My symptoms are day 1 extreme tiredness and mood swings, day 2 migraine, day 2to3 sickness and D followed by a few days feeling run down.

The only other thing I have noticed is that it seems worse if I have much sugar or fruit. Like maybe half a satsuma would be a much as I could do in a day, or a small glass of juice. I won't touch apples, grapes, melon etc any more, and even my old standby banana is too much.

I also tend to get bad reflux from fruit and sugar goodies.
I have been having maybe 2 gluten-free brownies a week in a coffee shop, and pinching the kids chocolate around Christmas. Can't stand most yogurts any more.

I have found recently and in the past that sugar is very addictive for me, and after a few days upping my consumption fairly minimally (say a small cake or couple of cookies) I often end up with sickness and D.

I am starting the Whole30 programme on 2nd, which is a wholefoods paleo type diet, as an elimination.

I know that part of the answer is to cut it out, but how extreme does this need to be?

I wondered if anyone has any advice about this?

I have had negative thyroid tests and I am not diabetic. I wondered about fructose intolerance or SIBO but my GI was dismissive. I have a small hiatus hernia.

Sorry if this is a mixed up post - as you can see I am confused :?

You could also be reacting to any one of the ingredients in 'sugar goodies'. I only need to eat a chocolate chip cooky to get reactions to all 7 of my diagnosed allergens (gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg).  If yogurt bothers you, at least consider eliminating dairy for awhile to see if your symptoms decrease. A better approach would be an ELISA (blood) test for immediate or delayed reaction allergies to commonly eaten foods. Then you wouldn't need to spend time guessing with elimination diets or following suggestions from other people.  We can be allergic to any food, including the 'safe' ones recommended for elimination diets.

Does anyone know which test I h better? Please let me know if you had the test and found it helpful. I had the elisa test and found it to be very accurate. My daughter just had the al-cat test and they never asked her about medications or did any fasting, which makes me think it is not as accurate. The elisa testing they had me fast, wear no make-up, lotion, no brushing teeth, and no medications until after the blood draw. I was much more impressed with the elisa test. Any feedback would be appreciated.

I had the ELISA test which correctly diagnosed 4 of my 7 allergens (delayed reaction IgG mediated). However, I was not asked to fast or refrain from meds, makeup, toothbrushing, etc. before the test. My husband also had the ELISA, which correctly diagnosed several of his allergies.  I don't know the (Company Name Removed - They Spammed This Forum and are Banned), but I'd recommend any blood test which looks for delayed reaction (IgG or IgA mediated) allergies, which are more common that the immediate reaction IgE mediated allergies.

My symptoms (cramping pain, bloating, gas, constipation) didn't disappear until I resolved all the other problems (besides gluten intolerance/celiac disease).  Avoiding gluten and dairy helped somewhat (the most extreme cramping pain decreased). Substituting soy products for dairy products exacerbated my symptoms. So I eliminated soy and got more relief. However, getting an ELISA test for other delayed reaction allergies helped me find more (really unexpected sources) food allergies. Abstaining from all my 7 diagnosed allergens helped, but I still had bloating, gas and constipation. I was also diagnosed with (by stool tests) and treated for 8 different gut bugs (bacteria, parasites and candida) over a 4 year period. Eventually I was diagnosed by Heidelberg capsule test with low stomach acid production. Taking betaine hydrochloride supplements before meals really improved digestion, which helped decrease the bloating and gas. Nevertheless constipation continued (despite trying all the suggestions from people with constipation solutions) until I was finally diagnosed with hypothyroidism (actually Hashimoto's thyroiditis which is highly correlated with gluten intolerance).  Constipation is a common symptom of hypothyroidism. My docs didn't even consider hypothyroidism because I was thin, although I always had low blood pressure, low pulse and low body temperature (all common hypothyroid symptoms).  I'm glad I found a naturopath who knew enough to test me for stomach acid production and hypothyroidism, because treating those conditions finally resolving my remaining symptoms.

Obviously, I'm the extreme example of many causes for my gut symptoms.  However, I just want to suggest that you keep looking for causes of symptoms after you rigidly avoid gluten or whatever other food allergies you may have (esp. those diagnosed by accurate blood tests).  Hopefully you won't need 8 years to resolve all your symptoms. Nevertheless, hang in there and keep asking your doc for tests (or find a good naturopath, if mainstream docs discount your symptoms).

Dr. Stephen Wangen, ND founded the IBS Treatment Center (located in North Seattle near Northgate Mall). He has celiac disease and several food allergies. So he understands the confusing symptoms and frustrating diagnostic process. I saw him for 4 years while he diagnosed my food allergies (with ELISA tests) and diagnosed and treated my 8 different gastrointestinal infections (bacteria, parasites and fungus).

Dr. Wendy Ellis, ND works at the Tahoma Clinic North (near Lake City in No. Seattle).  She figured out why I got so many gastro infections (8) over a 4 year period and understands all the complications of long undiagnosed celiac disease (nutritional deficiencies, leaky gut problems and other autoimmune conditions which can also impair immunity).  She's very knowledgable about hormonal problems (estrogen/progesterone, thyroid, adrenal fatigue, etc.).

Are you certain that you crave and 'can't stop eating' the gluten ingredient OR do you just miss gluten containing foods that you don't eat when you're following the gluten free diet? If you could find safe substitutes for tasty hamburgers or whatever other gluten containing foods you crave, would you try those? I suggest you list your favorite gluten containing foods and look for safe substitutes for all those (starting with hamburger buns).

There are sooo many gluten free products even in chain supermarkets now.  There are many gluten free recipe books to help you make you own safe gluten free foods. You may believe you are 'addicted' to gluten. However, you may also be addicted to your favorite foods which incidentally contain gluten.  Substituting safe ingredients for gluten will allow you to enjoy your favorite foods. Then you may conclude that you're just addicted to tasty food like most Americans.  

I have gluten intolerance and 6 other food allergies. All of those foods cause gut pain and bloating, which I prefer to avoid. So I can't eat gluten, dairy, soy, eggs, cane sugar, vanilla and nutmeg. Those ingredients are contained in most fast foods and processed foods.

In order to abstain from all my allergens, I found safe and tasty substitutes for all my former favorite foods which contained my allergens. The most difficult was eggs, because I couldn't find a dairy/soy free mayonnaise for many years. However, I have great substitutes for all my former favorite foods containing all my allergies. I can't eat any processed (ready to eat) pastries, but I have several favorite gluten free breads, cereals and grains which don't contain my other allergens. However, last year I discovered 2 great baking recipe books which were free of 5 of my 7 allergens. That made baking much easier so that I can enjoy holiday pastries now.

You actually need the full panel of thyroid tests including TSH, free T3, free T4, reverse T3, TPOab (thyroid peroxidase antibodies). The last test can diagnosed Hashimoto's thyroiditis, an autoimmune hypothyroid condition which is highly correlated with celiac disease and gluten intolerance. You may need to see an endocrinologist to get all the tests you need, but at least try to persuade your current doc to give you a complete panel of thyroid tests.

Constipation is a common symptom of hypothyroidism (low thyroid function). I had chronic constipation all my life. I followed all the constipation advice (more fluids, fiber, probiotics, eliminate gluten and other delayed reaction food allergies, resolve any gut bug (parasites, bacteria, yeast) infections, take massive doses of magnesium, etc., etc.) None of those practices gave me consistent normal stools.The only time I had consistently soft stools was when I had c-diff, which gives most people bad diarrhea. I finally resolved my constipatioin after I got effective thyroid supplements.  Even while I was treating hypothyroidism with thyroid supplements, constipation was my first clue that my dose was not high enough or the supplement wasn't resolving my hypo symptoms. (My other hypo symptoms were feeling cold when others are warm and feeling fatigued even when I got more than enough sleep every night.)

It seems that most people with Celiacs have diarrhea.  I was wondering because I don't really have diarrhea...and yet I mysteriously lost 20 lbs and I used to get lots of weird symptoms that seemed related to food.  If anything, I actually get constipated about once a week.

Thanks

Some celiacs (including me) had constipation, rather than diarrhea, as their chronic symptom.  I also had cramping pain and bloating. 4 years after I was dx'd with celiac, I was dx'd w/ Hashimoto's hypothyroidism, which commonly occurs among people w/ gluten intolerance. Because my doctor rigidly used the classic profile for celiac (diarrhea, short, thin and fatigued), she dismissed my last 3 symptoms, because I didn't have diarrhea.  Hashimoto's often causes constipation and weight gain, because it slows metabolism.  So the same doc dismissed my other Hashimoto's symptoms, because I didn't have a weight problem (I was underweight because of celiac disease).  Symptoms of one disease masked the other disease. SIGH So I learned that you don't need ALL the classic symptoms to have a disease like celiac disease or Hashimoto's thyroiditis. I wonder how long doctors will continue to hold rigid views of (and profiles for) various autoimmune diseases.

So you could have celiac disease even w/o diarrhea or other 'classic' symptoms.

I was diagnosed in 2008 by blood tests then confirmed by biopsy. I have celiac disease. I've been gluten free ever since. Initially I was extremely cautious. However over the last 6 months or so I've become a bit more relaxed, and if something 'looked' gluten free at a party I would try it. Amazingly this method worked for me and I never get sick.

About a week ago I screwed up big time while eating sushi. I unknowingly ate a piece with chopped tempura in it. I was expecting the worst but only noticed a canker sore on my lip - no appreciable GI distress.

So here's my question: it appears as if I am a celiac that is somewhat insensitive to gluten (sounds like an oxymoron?). If I get traces of gluten in passing I observe no effect, a little bit of gluten (like that tempura roll) I see mild effects. I suspect, but am not willing to find out, if I had a big bowl of pasta I'd get very sick again.

Does this make any sense given what we understand about celiac disease? I'd appreciate anyone's thoughts on the subject.

Also, does this means it's safe for me to ingest trace amounts of gluten?

Active celiac disease (continuing to consume  gluten) is correlated with many autoimmune diseases (including MS, type 1 diabetes, rheumatoid arthritis, lupus, Hashimoto's thyroiditis, Sjogren's, etc., etc.). So is you don't have any reaction symptoms typicaly associated with celiac, you may continue to damage your intestines enough to let all those gluten antibodies wreck havoc on any number of other organs in your body and cause any of those autoimmune diseases. Of course, if you go to mainstream docs with symptoms of those autoimmune diseases, they will gladly prescribe for you drugs to treat your symptoms, while you continue to eat gluten and continue the damage which caused the autoimmune problems.

Also, many people find that after long periods of abstinence between episodes of gluten consumption, their reaction symptoms are more and more severe. So if you keep having occasional gluten, you may indeed develop traditional (painful) gluten reaction symptoms.

Some of us who were not diagnosed until midlife (after years of misdiagnoses) have all those painful reaction symptoms AND autoimmune diseases. Lucky you for getting diagnosed before you had really serious damage.  Stay healthy by abstaining from gluten.

I saw posts about the Food for life corn tortillas and people being gluten-ed, but I just ate a gluten free brown rice one and now have a horrible stomach ache and D.  The only thing I ate today was an apple and a banana so I am pretty confident that it has to be this tortilla.  I was just curious if anyone else has had any issues w/ these?

I eat the FFL rice tortillas at least once every other day. I've never had reactions to those. I'm VERY sensitive to gluten (and my other 6 diagnosed delayed reaction allergies). 1-3 bites of something with my allergens will give me 2 weeks of gut pain, bloating and indigestion. Gluten gives me excruciating gut pain.  However, I've never had any of those reaction symptoms after eating the FFL rice tortillas.

Delayed reaction allergens (like gluten) are difficult to pinpoint. What we eat may not cause obvious symptoms for 24-72 hours after ingestion.  Sometimes I don't think I'm reacting at all, because the symptoms are so subtle. However 48-72 hours later I begin to experience more severe pain and reaction symptoms. So I need to consider everything I ate during the past few days, unless I have a label which tells me that I consumed one of my allergens.

I'm not feeling all the way better with my stomach and still having some C. I felt much better after going gluten free and I was regular until I got glutened over 2 weeks ago. I have been having some cramping and bloating along with gas. Its common for many people to go dairy free as well as gluten free at first. I have cut out all gluten, so I am getting my carbs from dairy. I love dairy. I need dairy. I haven't been drinking milk for over a month. Now I am cutting out cheese and yogurt.

Do I need to cut out butter?

Can I cheat sometimes with dairy? I have a lactose blocker but I don't know if it works.

Do I have to worry about dairy in things (brownies, cookies, pancakes)?

Also one quick question: Is candy corn gluten free?

Thanks for all the help and my doctors app. is on thursday.

Although I thought I had lactose intolerance and used "Lactaid" drops, tablets and/or milk for several years before my celiac diagnosis, I was diagnosed with casein allergy along with gluten intolerance (and celiac markers). So I realized I was not digesting the casein protein in dairy products, not just the dairy sugar 'lactose'.  From then on I abstained from all forms of dairy, anything which contained casein, rennet or whey, because I hated those waves of cramping pain, sinus infections and constipation reaction symptoms from dairy.  To answer your questions:

Yes,  you need to find a safe casein/dairy free butter substitute. If you tolerate soy, Earth Balance (yellow container) is a great substitute. If not, the red carton Earth Balance product is equally good.

Cheating sometimes with dairy just means you'll get more intense reaction symptoms than if you never stopped eating dairy.  The longer periods between consumption cause even stronger (more painful) reactions.  If you're going off dairy, find good substitutes so that you won't feel tempted to cheat. I went off dairy in July 2004. Since then I've found more and more great (soy free) substitutes for all my former favorite dairy products.

YES, you'll have to abstain from products with contain small amounts of dairy. Read labels. Shop at stores which carry allergy free products. You will find dairy free products.  However, you can make your own brownies, cookies, pancakes for much less than you can buy them. There are gluten-free pancake mixes to which you can add either rice, soy, coconut, hemp or any nut milks.  I cook with rice milk (because it's cheap) unless I want a higher fat content in my end result. Then I'll use either coconut or hazelnut milk (I don't have nut allergies).

Yes, candy corn is gluten free.

Even with a very very mild shower, I get this uneasy feeling in my chest and I notice all of the blue veins in my hands and arms become more prominent.  I have had a complete heart work up and everything is good there.  I also have adrenal fatigue that I suspect that I got from gluten intolerance.

Anybody else have this?

I had just the opposite (low core body temperature) for years. I froze all the time. Eventually a naturopath gave me a complete panel of thyroid hormone tests and found I had Hashimoto's hypothyrodism. Hashimoto's is highlly correlated with gluten intolerance (I've been diagnosed with celiac disease).  Hyperthyroidism can cause the opposite symptoms (feeling overheated all the time).  So I wonder whether your doc has given you a complete thyroid panel of tests (TSH, free t3, free t4, TPOab (thyroid antibodies))?

Yes, some people can eventually go back to eating gluten without symptoms or damage even if they are celiac. This is well known in the medical community, and has been written up in multiple articles. Mass denial of the possibility of recovery from celiac, however slim, on this board is unfortunate.  

Gluten intolerance cam come and go too, depending on gut health.  There is growing evidence that food intolerances and autoimmunity are a result of dysbiosis and leaky gut. Heal the gut and establish normal bacterial flora, and the food intolerances improve or disappear because food stays on the correct side of the intestinal wall and outo f the bloodstream where it causes trouble.  This is the reason Alvine is working on a zonulin blocker drug.

I dug up some info on celiac remission for someone else on the board in this thread.

http://www.celiac.com/gluten-free/topic/85651-transient-celiac-autoimmunity-in-a-adult/page__p__736328#entry736328

How many of those people, who return to eating gluten and don't have gut symptoms, remain free of other autoimmune diseases for the rest of their lives?? Freedom from gut symptoms ('classic' celiac symptoms) doesn't necessarily mean freedom from damage from gluten antibodies in other parts of the body.