quincy

Thanks for the response! It makes me feel better than this medication is gluten free.

However, I called the doctors office and they won't give me a refill. I need to make an appointment first, and the earliest they can get me in is next Thursday afternoon.

Oh well. I'll have to stick it out until then. Hopefully the glutening will be over by then anyway. I am feeling less consistently anxious at the moment, but it comes and goes.

Klonapin is also a benzo drug like Xanax but it is more effective for longer term use. Xanax can cause very bad rebound anxiety so you wind up having to take it every 6 hours indefinitely or you will get awful rebound anxiety worse than the initial anxiety.

Xanax works for the night terrors and panic attacks, but you really don't want to use it more than an attack here and there. Klonapin allows you to take a dose and it will keep the anxiety awayall day pretty much. I am very sensitive to meds to .5 mgs really works for me. I take it at night before bed if I have to, but thankfully my most recent bout with anxeity depression passed with minimal klonapin use.

They are saying that these are the ones we test and will label gluten-free. Then they say this other list has no gluten ingredients but we do not test them and they may be made on the machinery with the Sun Chips or other wheat based chips. That does not mean they wouldn't pass the test, they just are not tested.

The nacho cheese ones with wheat as ingredient may be some of the older ones from when they used wheat.

This was in the email I received. It sounds like the bag listed wheat but was not actually made with it? Why would the company allow product to be placed into old packages if in fact there was no wheat in there?:

'Thank you for writing to us. The wheat flour was removed from Doritos Nacho Cheese earlier this year. There is still older packaging being used that list wheat flour as an ingredient, even though it has been removed and the product is safe individuals who need to avoid gluten. The product is the same in all size bags.'

I've had a few different experiences with Panera, which used to be my Sunday lunch spot. When I was newly DX, I asked if they would change gloves because the asst manager on duty refused to make my salad from the back. When I felt ill afterwards the girl who took my order asked if he had, he admitted he had not taken the request serious. That being said, I watched the line servers prepare orders while I waited for my daughters to go order. It didn't really matter if he had changed gloves because the croutons and tortila strips where right beside the lettus. I know others have eaten at panera and been okay. Mine does not bake in the store. I think it really depends on the Manager on duty at the time and what they will do for you. I know mine has a book which tells you what is and isn't gluten free. I would contact them and when it is a slow time, go in and talk to the managers.

Best wishes!

thank you. I think its a risk in the final analysis. I might not get a significant amount of gluten, but it all adds up each day.

Thanks for all the input...

I can't show you the exact law, but I remember there is often even a disclaimer on the outer box to check the inside packets for exact ingredients. Something I have seen at Costco or Sams large boxes. Probably because the little packets can be sold individually so you would need correct info at the point of sale and eating.

I think it would still be illegal to list ingredients and not actually have one in the product. I suppose this would really be an issue with an expensive ingredient being listed, you pay a premium and its not actually in it. Like a nut mix saying peanuts and cashews with no cashews.

Also, are they subbing corn meal or potato starch for the wheat? That could be a labelling issue.

Lke you said, if it lists wheat in either place, I wouldn't chance it.

I have stayed away from them since my dx 2 years ago, but I remember reading somewhere (perhaps this site?) that they were ok. There is nothing in the ingredients list on the large bags to indicate

any gluten ingredients, though I was not aware that they were produced on lines that share gluten. THAT would def be a no-no and if it had said that on the package I would have put it right back on the shelf.... glad for all the info, thanks....

I just spoke with a rep and she said that since November 2011 all their products no longer have wheat flour in them. She also said that all of their lines are run with allergens in mind and that all of the lines are sanitized between runs.

but unless they are saying "gluten free" on the package then they are not adhering to 20 ppm, I assume? then it wouldn't be safe for us?

This was my second small bag of doritos I purchased this week. Just got a craving for them for some reason but didnt want to buy a large bag. Freaked out when I saw wheat flour listed but there isnt any in the large bags.

whats going on with that? No wonder have been in a fog, anxious, going to the bathroom more frequently.... argghhh.. this sucks!!!

I will try and find out.It did not say "ALL" research. You must admit, there are many (many) celiacs following all the rules and still suffering. You bother, as I do, to understand what affects us negatively and positively. You are correct, medical research recommends the gluten free diet. The question is, is corn gluten free?

Osborne, from the gluten free society, is not only saying that corn is bad, he is saying that ALL grains are bad, including rice, quinoa, etc. I get his updates all the time but he charges a heck of a lot of money to join his Gluten Warrior club. I kinda resent that because he is making alot of money off of what he says the medical community is not telling us, which is his angle to get people to pay his yearly registration fee plus the monthly charge... I think its an insult really.

Does anyone know about eating the salads at Panera? I have researched and gotten different opinions. One site says their chicken is marinated with a gluten containing substance etc.

I make sure they change their gloves before they handle my food but I am not sure about the chicken...

My worst symptom is anxiety. It built up and built up until I had what I assume is a nervous breakdown even though I don't know for sure. I had this sense of doom that I was going to die. I focused on it day and night and was scared to fall asleep because I thought I wouldn't wake up. Every time I looked at my young kids I would tear up thinking they would grow up without me. When I finally got diagnosed with a gluten allergy in my mind I had brain tumors, diabetes, cancer, heart attacks, you name it I had it. I finally just lost it one day and cried uncontrolably, I was apologizing to my wife for leaving her to raise two young kids without me, and cried when I saw my 5 year old. About 2 weeks after I went gluten free I was laying in bed and just started breathing deeply and realized how calm I was. It never occured to me that my gluten intolerance would cure my anxiety. Most people say that it is due to malabsorption of vitamins, but the weird thing is that if I accidentally gluten myself now, the first symptom I feel is I get really anxious. It will get better, but 1 year later it still isn't perfect. Hang in there.

what you describe is very similar to what I went through. My anxiety manifested as an intense social anxiet/shyness and I lost alot of weight and would not leave my house except at night. Having never experienced anything like that before, I began to fear that I was dying because I had lost so much weight. I got through the first episode with the use of ssri medication and recovered. but the next episode a year later was as bad and then I was dx'd. The second treatment was prozac and it 's what saved me. I felt completely normal after taking it a few weeks.

The problem now is that since I don't take the ssri to boost my serotonin, I still struggle in the mornings; getting going, feeling happy to face the world. Its still not easy even though I am gluten free. could it be that I was exposed to gluten for my whole life that the serotonin deficit might always be a problem? any thoughts or comment are greatly encouraged and appreciated...

Im 3 1/2 weeks gluten-free. The burning I'm my stomach and under my right rib is finally gone but I'm still having some pain in my back (indigestion?). When can I expect to feel normal again? Ive heard 3 months and I've heard it may take an entire year? Anyone else have upper back pain from heartburn or indigestion?

I had what you describe for several months maybe 6 mos after going gluten free. My guess is the throbbing pain in my right back was duodenitis? I never got an answer from any doctors about it but I assume inflammation in the intestine. For me it was very uncomfortable because I sleep on my right side and it felt like something was always "pulling" on my gut there.. and it went to the back.

3.5 weeks very very early in your healing process. I am 2 years out but first year was just long haul..... hang in there though it will get better. I assume you had endoscopy. Did you find out what level of celiac damage you had? ie marsh level I II III

Interesting. I used to be borderline anemic too.

yes that is interesting. I had low ferritin levels when I first was diagnosed

I am starting to think they don't know how to interpret labs and "think". My ND is great at thinking about the labs. Thankfully.

And statistically thyroid problems are higher in women than men. I have no idea what's up with ignoring the dropping testosterone.

Its been awhile since I posted on this thread, so maybe someone will pick up on it. My recent labs showed my TSH down to 2, and if based on how i feel is an indicator, the thyroid supplement I was taking has worked. I don't feel as tired anymore, my weight is down to a more comfortable and healthy range for me and I don't feel as depressed or low as I used to.

I don't have my numbers, but my T3, T4, and reverse T3 and ratios were normal.

I recently had a saliva test to check cortisol in the morning and there was barely a reading. Mornings are the worst for me. my cortisol level was .3, barely on the chart. does anyone have any knowledge of such a bad cortisol number and how I get that to go up?

For me a canker sore is a sure sign that I've gotten glutened! I hope you can get to the bottom of it. I hate those things. Ouch!

yes it is one of the symptoms of ceiac. I used to get them in my throat too. The silver nitrate stings for sure, but its worth the momentary pain to just have it gone.

My dentist uses an acid and that hurts like heck but gone completely right away.

you should begin to notice alot of improvement. I got rid of all product with SLS including shampoos. be careful of mouthwash and gum because those are irritants as well.

Oh, be careful with ascorbic acid, as in vitamin c tablets. That was the biggest problem for me. as soon as I would take one I would get a canker sore....

Wow. Just wow. I've suffered canker sores since I was a kid. At most I'd get one, maybe 2 a month and often could go months between them. Since going gluten-free they've reduced in frequency and longevity and recently they went away entirely which was nice. I posted in another thread how I'm home on vacation for a while in my gluten eater home and some of my symptoms are popping up. Well last night started canker sore #5 since June 10. As one heals another pops up. 5 sores in 16 days is a totally bizarre ocurance for me. They are much smaller less painful and heal in about 4 days which is way better than the giant craters that would last a week or longer that I used to get. But I'm just totally thrown by these consecutive sores. I just bought a new dedicated toaster and am going to be much more diligent about how I handle the kids food. Hopefully I can get to the bottom of this and put an end to it.

wow, sorry to hear about the suffering you have gone through. I completely relate as I am sure many of us can. I suffered from canker sores since childhood and for awhile I was going to my GP once a month and he would burn them off with silver nitrate. Of course he never put all my symptoms together to see if I was gluten intolerant.

So I did alot of research and changed my toothpaste to one that did not contain sodium lauryl sulfate (sls). The only one I knew at the time was Rembrandt Canker Sore brand. but there are other natural toothpastes out there and also sensodyne makes one now for enamel protection that does not contain SLS. I have been using this for years before I was dx'd and went gluten-free, and my incidence of canker sores almost disappeared.

hope this helps. My new dentist uses some kind of acid if I get a bad one now. No matter how careful you are, you can still get one. I also take the amino acid L-Lysine at night before bed and it always seems to help reduce the length and severity...

I apologize, as we have new members post all the time on six year old posts.

Swanson is pretty good about listing.

no need to apologize I was not offended. I just saw this listed and thought I could get others to respond if anyone had a bad experience with the beef broth. again, it is not listed on their site as being gluten free, so there must be an offending ingredient that I will have to investigate with them.

if any readers out there have had a similar experience please respond. thanks.

Please note that you are responding to a post over two years old. Sometimes, well....always, it's best to reply on reading labels, rather than lists that may be out of date or product change.

Campbell US and Campbell Canada have two very distinctive gluten free listings. But they will always list gluten if present in their ingredients.

yes i am aware this an old thread. I always read labels, however, there is nothing on their beef broth label that would indicate it was not gluten-free. Their web site has both us and canada product lists and this

link I provided is from the US dated Feb 2012.

I just got off the phone with swanson. Their chicken and vegetable broth is gluten-free. BUT The ORGANIC Chicken broth is not listed as gluten-free. The beef I done know about, because I don't use much and didn't ask. Hope this helps.

the link to swanson's list of gluten free items OMITS their canned beef broth!! I just got violently ill from eating lentil soup made with it, though my pocket guide from Columbia Med Ctr lists swanson's broth as gluten-free.

here is the link to the website:

Open Original Shared Link

Hey GFinDC,

do you avoid all restaurants? I have been eating out lately and kind of wondering if I am taking too many risks now that I have 2 year under my belt.

lately, I was visiting Organic stores that have hot/cold food in the back and I finally had to stop after really questioning their food preparers. They didn't use ANY prevention measures and still would post things as gluten free on their ingredients cards... that really bugged me. they didn't even use a separate cutting board for celiac sake!

thanks!

quincy

As soon as I get my results from the allergist I'll be trying some elimination diets to see if cutting out certain things help more with my migraines and stomach issues.

sorry to hear you are in distress, but its a good thing you finally found out. Did you have a biopsy? if so, how bad was the villous atrophy?

At 3 months, I am sorry to say, your healing is not even in the early stages yet. Your body is just reeling now from the gluten withdrawal which you will get from eating MOST

processed foods, even stuff like tostitos scoops which in a year you will probably be able to tolerate without any problems. I got D from corn and milk in the first year, so just keep that in mind.

It's not just because you're male. They do it to everybody.

I would say they're less likely to even test it if you're male, though...

I always heard of women complaining of thyroid problems so maybe they just don't want to bother unless the number is above the "normal" range. Every time I would take the testosterone test the number would come back lower and lower, and I have to wonder how low does it have to be before they suggest

something is wrong.... I really think these doctors think celiac is just a stomach ache!!!!

My TSH level is always below 1. My doctor does not really look at TSH, but looks at the Free T3 and Free T4 numbers. I feel best when my Free T3 is towards the upper end of the range and my Free T4 is towards the middle.

I am wondering why my TSH has consistently been 3.47 and the endocrinologist NEVER said there was anything wrong with that number?? Is it because I am a male?

it sounds like a stupid rhetorical question, but I am stumped. In fact, NONE of my doctors, GI, or GP ever said anything about it. The only one who raised a flag was my integrated medicine internist. I just always assumed since the number was below 4 on the labcorp range I was ok....

Yes! This is exactly what I did ----and still do.

But the question is...do they all LOOK at it?

When I was given the B-12 and Folate supps because of deficiencies, they both SAW it. They both knew I was supplementing.

One test came back HIGH B6, so he said stop that, but he did not say stop ALL the Bs. The other one came back HIGH B-12, so I was told to cut back. The PCP guy says, "No! take it for life."

See what I mean?

Too many cooks.

I stick with my ONE GI doc now and go with his recommendations, based on test levels and how I feel. he is the one who said Toxicity can occur. And I think he was right, I feel BETTER off the high B's and the neuropathy that increased has nearly diminished.

I know so much more than I did 3 years ago and I never would have put up with this BS had I been better informed.

I have read that people suffering with bladder problems should avoid B6, so lately I have not been taking anything with b6 but getting it from foods I eat. People with IC are very familiar with this I imagine. I decided to eliminate the b6 supplements for this reason.

I'm another one. I have a "break day" once every 3 months though.

I don't eat starches for the most part either. If I'm running low on crabs for the day then I make fresh vegetable juice to up it, sometimes I eat a little bit of nuts afterwards to control my blood sugar.

I didn't get it from a book or anything though, I came to this conclusion from my own experiments on myself over the years.

I have switched off of most carbs to meats, veggies, some fruits etc. Due to my bladder problems I don't eat any citrus fruits but I will have blueberries in a smoothie etc. sometimes melon. I eat wild salmon several times a week, talapia, eggs once in a while and a slice or two of non-cured bacon with breakfast or lunch for the feeling of fullness.

So far I went down 10 pounds and I can fit into my jeans again, so thats a plus. The paleo diet not too bad if you can feel full on good fats I think.

I agree with Skylark. Your TSH is a little higher than the level at which most thyroid patients report feeling okay. Hopefully your T3 and T4 tests will be revealing.

It is good that your doctor is looking at your reverse T3. Docs don't usually do that. Reverse T3 is created when the "wrong" iodine atom is stripped from the T4 molecule, and the chemical structure looks like a mirror image of the regular T3. What happens then is, the thyroid receptors in your cells don't recognize it and can't use it for metabolism. Kind of like a polarized electrical plug that can only go into the receptacle one way.

When your body does this, and it can do it for many reasons, you have "thyroid hormone resistance". Too many docs won't even acknowledge the condition exists. It causes you to feel hypothyroid even with normal lab numbers, and will get you a diagnosis like "fibromyalgia" if you are lucky, "all in your head" or "it can't be your thyroid,your TSH is normal" if you are not lucky.

You don't want to look at the straight RT3 number, rather you want to look at your reverse T3 ratio. That is found by dividing your T3 measurement by your reverse T3 measurement. If your T3 is a "total T3" (the lab sheet will tell you) your ratio should be around 10 or less. If your T3 is the "free T3" you will want a ratio of 20 or less.

EDITED TO ADD: Be sure the T3 and Reverse T3 you are using in your calculation are using the same unit of measurement or your numbers won't work! And be sure they are using results from the same blood draw.

There are many reasons the body creates reverse T3, it's pretty complicated. You can Google it and find out more. If you have it, there is a Yahoo group that could be some help.

thanks for your information, it seems my doctor (functional medicine) mentioned what you mentioned here about ratios. My testosterone has gone steadily down over the last several months. I had gained alot of weight and my bone density is low, plus I have low ferritin.

my doctor gave me Calcium D-Glucarate and Thyroid Synergy by a company called Designs for Health ( I am not employed by them) to help me. Fatigue, low energy, irrational fears, anxiety, weight gain. this must all be thyroid related. I am hoping I can bring down estrogen and feel better or the next step is bio identical HRT.

and yes skylark, I am tired. I work 2 jobs and I am completely wiped out every day. I almost sometimes wonder if I can make it through the days anymore. I just wanna sleep or rest on the couch. I am glad I lost 16 pounds by cutting out most carbs so I at least feel better that i can fit into my jeans now!! Funny because the endocrinologist I went to said nothing about my TSH numbers being too high, it was my function medicine internist who did not like the numbers and took action. Celiac is far reaching in the body, wow.

It's a little-known secret that TSH can vary several points during the day. I do not manage my thyroid by TSH but by symptoms, and Free Thyroid Hormone levels. I am generally suppressed, with a TSH averaging .03.

TSH is NOT a thyroid hormone and if you are taking thyroid meds your docs should manage your dose using Free T3 and Free T4 because the supplemented hormone messes up the TSH-thyroid gland feedback loop. T3 and T4 are the main thyroid hormones your body needs (there are others but T3 and T4 are most prominent).

T4 is the "reserve" hormone which is stripped of an iodine atom to create T3. T3 is the active form of hormone picked up by receptors to be used by your cells.

I do not feel well with my TSH even in the "new normal" ranges. If my TSH goes up to 2.0 or over, I feel lousy.

my labcorp score is 3.47. I really know nothing about thyroid issues but I will be getting a test soon for t4 and t3 and reverse t3 so I don't know what those scores are yet. any help here would be much appreciated.

Very interesting! When I met with doc this week he told me he thought I had an over-active baldder which I have to say, I don't think is the case but I do have a referral to urology.

As far as peanut butter, it is on the high oxalate food list. No sure if that could be giving you issues or not. I am taking them out of my diet.

Did you get any resolution to your bladder symptoms? I still am improving but its still uncomfortable: it feels like a UTI but there is never any infection or blood in the urine. some of us

might have painful bladder syndrome (PBS) or Overactive bladder syndrome (OBS) or IC interstitial cystitis.

my naturopath doctor recently emailed me this statement about the latest theory of IC : "one of the theories about IC is that it is the liver not quenching or processing the metabolites fast enough (or a leaky gut that's recycing things several times making the liver repeat everything!)"

I don't fully understand what she means here and I will ask her when I see her this Thursday. keep you posted. If anyone reads this post and wants to provide an update on bladder problems please do because this has been a major quality of life issue for many of us....