healinginprogress

I suspected thyroid in my case, too, but my TSH is at 2.5. Is there a different test for parathyroid?

Unfortunately, I don't have any ideas, but just wanted to tell you I'm dealing with similar problems. I haven't been able to return to work, it's ridiculous Have you had your TTG retested or another biopsy? My TTG is still through the roof, so everyone thinks I MUST be getting gluten somewhere, but I (like you appear to be) am VERY VERY careful! My GI has no idea and has never seen someone's TTG stay over 200 for so long while on a gluten-free diet. So, as I said, I don't have any answers, I just feel your frustration, as I'm sure people will also tell you "you must be getting gluten somewhere"

Grrrrrrrrr. WTH??!

Wow, CONGRATS!!!! And thanks for letting us newbies know that it DOES get better

Hi All,

Today I got the reports of my DD's one year follow up blood tests and her anti ttg iga tests are the same as they were at the time of diagnosis, very high positive (>290). Her last test was done in september 2011 and report was the same. After that report, we became super strict and everything for her was prepared at home right from scratch and i mean it. Absolutely, no eating out etc everything was followed completely with full honesty. when i told my DD about her reports, her first reaction was "Mamma, i didn't do anything naughty." She is careful...really careful. the entire family has gone gluten free so as to avoid all kind of cc. So, we did everything we could to the best of our knowledge. And here i am with the results. What do i do? Her thyroid, diabetes, cholestrol all tests are normal.

I understand sometimes other auto immune diseases can keep the antibody levels high, but what is it that i can test for? I don't see symptoms of anything else.

Can someone throw some light on what tests can be done? what are the related symptoms? My DD has shown great improvement in terms of overall health, height and weight etc after going gluten free. She was diagnosed through a biopsy though now i am getting a feel if the biopsy was done correctly or not whether she is really a celiac or not? She doesn't ever show any symptoms of getting glutened. My entire faith on her diagnoses has shaken. I feel so helpless. We would be meeting our doctor soon. Please throw any suggestions so that we can sort out this riddle. Its killing me now.

I have always been on this forum and got a lot from it. My big thanks to everybody for their support and suggestions.

Nannu

I am in the same boat with high TTG a year later despite being extremely careful in a gluten-free household. I definitely have symptoms when glutened, though, and all my symptoms have not gone away.

Healinginprogress, has your TTG gone down at all in a year? What was your original score?

My original score was >200...they stop counting at 200. I have had two tests since then, and both have been >200, still. So, I guess, in reality, it could have gone down, since I have no idea the actual starting value...300, 400. Whatever it is, it is still reading over 200, which is why I think maybe other autoimmune disorders could be involved. Especially since I'm still not feeling 100%. I did have some of my bowel removed 11 weeks ago, so it's hard to know what symptoms are from what.

Thanks for everyone's responses! Although I do find it disturbing that it could take more than a year to really get the blood tests normal. Gemini - you mentioned the ttg was high for you at one year due to other autoimmune conditions. I didn't know it worked like that. I've kind of wondered if I could have other autoimmune issues. What other autoimmune diseases could cause this to be raised? Sounds like maybe something I should ask the doctor about. They never tested me for anything except celiac disease.

I'd like to know this answer, too. My TTG is still over 200 after a year. I asked my doctor for an IgA AND IgG, but at the lab, they just did the TTG (IgA). I want to ask about other autoimmune disorders, too, but would like to have some more info before I go back to him....since we have to do this on our own, it seems.

It's true, these are great....gotta tighten up those deep core muscles! They can also help prevent back problems..BONUS! I'm a Kinesiologist and personal trainer and this is always where we start...from the inside-out

Is it possible that she is constipated? It is tougher to get enough fiber on the gluten-free diet, so make sure she is...regular? I ended up in emerg once with a hugely distended belly and lots of pain and they took an x-ray (weird) and the doc told me I was "REALLY VERY backed up". Kind of embarassing I have found NutraCleanse to be the best gluten-free product so far to keep things moving. It's a blend of flax seeds and some other helpful ingredients. I also take flax oil. Another option that I have found helpful is a blended fruit and veggie drink. Just make sure you use a blender or Vitamix type thing and not a juicer, or you'll lose all the pulp...the fiber I hope this helps?

The surgery was for a rectal prolapse and sigmoid resection...the damage to my insides was pretty severe by the time I was diagnosed, and needed some repairing. My colon was repaired and he removed part of my intestines. I had a very positive blood test last February and went gluten-free because there was a long wait for an endoscopy. I didn't get the endoscopy and colonoscopy until late September...I only did a brief gluten-challenge which made me extremely sick, but I still had a positive biopsy. The surgery was November 17th.

But pre-surgery and post-surgery alike, I have not gone more than a couple days feeling "good". I definitely felt worse before going gluten-free, but please try to understand.

As for my bloodwork...I don't have a GI. My family doctor didn't seem to know at all what it meant when my TTG was still over 200 in November, before my surgery. I just had a full workup done (at my request), because I wanted to see if there was anything missing...maybe a vitamin deficiency, etc. Everything looks normal to me, except the TTG, which, again, is over 200. I am meeting with my doctor on Wednesday to discuss my bloodwork, but I am uncertain he will have much more to say than last time.

I have been told that you don't "treat" bloodwork. But if my antibodies were that high and I DID NOT have symptoms still, then maybe I would let it go.

I don't know, maybe I just need to stop trying to figure out what's wrong. All I really want is to feel better. I want my symptoms to be managed. Or I want to know that this is as good as it gets so that I can just accept it and learn to live the best I can with chronic pain and discomfort.

My head hurts enough right now that it is borderline difficult to even find the right words. I have been gluten-free for almost a year and I still have daily symptoms..ranging from mild to severe. I know that nobody is ever 100%, but I don't even feel close. I had colorectal surgery nearly ten weeks ago. It was major surgery, so I know that plays a part. I'm still unable to work or exercise much. But I'm just in pain and discomfort on a daily basis.

Going gluten-free all but eliminated my nausea, vomiting and diarrhea. But the symptoms that remain include brain fog, migraines, tummy distension, gas, constipation, insomnia, depression, anxiety, muscle and joint pain, extreme fatigue.

I am very careful with what I eat. My entire house is gluten-free and I have done tons of research. There is no hidden gluten. But my TTG levels are still over 200. From what I have read, this means my antibodies are still really high. Which generally would mean gluten in the diet...but there is NOT!

I've removed dairy. I have recently tried removing soy and corn...I barely ate any, anyways.

When does this get better? The chronic pain and/or illness is seriously wearing on my psyche. I know I have Celiac Disease, but I don't know why I only seem to be minimally responding to the gluten-free diet. Or is it just taking a really long time? I can't seem to find clear answers other than the Celiac diagnosis. I don't want to cut out any more foods. I'm already feeling depressed about what I've eliminated so far.......which I would NOT feel depressed about if it actually seemed to make a difference! Yes, I am WAY SICKER on gluten, and I will NOT go back.....but my health and quality of life are still not normal...not even functional.

I don't know if I'm really making sense, or what I'm even asking. I'm 29. At this point I'd say I could count how many "good days" I have in a month on one hand. This can't be right!

I agree--for many of us grains are an important source of vitamins and fibre. However they aren't for everyone. One can get by just fine with root vegetables and squash. Grains were not a major part of the human diet until 15 thousand years ago. Most of our pre-history was without grains.

This is very true, one just has to ensure they're still getting all the proper carb-fat-protein ratios, vitamins, and minerals...logging your foods can really help with this, and, if necessary, as most have said..supplementation and probiotics.

I am almost 8months gluten free and JUST had my biopsy done, with only 7-10days on the gluten challenge (supposed to be 6-8WEEKS), and my biopsies were very positive. This tells me...STILL HEALING. And, as I even type, I have brain fog, headache, yesterday I was so bloated, which later turned into foul gas. I feel like I shouldn't still be having symptoms on a daily basis (although the damage has actual caused me to have a rectal prolapse and an intussusception, so it must be pretty extensive damage, as I require surgery). But still...I hate it. I'm SO careful! The ONLY gluten in my new household is fish food, and I'm going to be getting gloves to deal with that I'm still investigating my makeup, but what I put on my lips is gluten free. I've tried investigating other things, and I'm going to start again...soy seemed to come up as a possibility.

What I'm getting at, is that if I'm showing damage after 8 months gluten-free, then I think you're symptoms are normal. It's really tough not knowing whether it's gluten damage or something else, though, isn't it?

Also, with regards to grain-free, which a couple of you mentioned. I was really shocked when I went to a dietitian and she had me work with the Canadian Food Guide...wtf? I had completely forgot that we are "supposed" to have 5-7 servings of grains per day. I have started logging my food with myfitnesspal.com (great app and site), and I STILL struggle to get enough carbs, even though I eat lots of veg and some fruits. Grains give us energy, so it MIGHT be worth a shot adding some more grains to boost your energy. I haven't noticed a big difference, but I never thought of things that way. I had practically cut out an entire food group, and regardless of carb content, grains contain nutrients/vitamins that other foods don't...that's why there are different food groups!

Anyways, it's just "food for thought", if you will. I'm still not sold on it, I've never been a huge fan of the food guide, I usually just try to eat carbs, protein, and healthy fats with each meal/snack. But when I looked at it in a different way...the nutritional content...it sort of makes sense!

(PS: when corn is used as a grain, it is part of the grain group, ie. gluten-free corn tortillas)

Thank you for the responses! Now, I am not a quitter, so I feel a little like I "wimped out", but the intensity of my migraine the 3rd morning definitely changed my mind about the "challenge". I will call the doctor on Monday and see what he says. He did, after all, give me the option. And if I was asymptomatic then I could see staying on the challenge for sure. But I puked so many times yesterday that my throat is sore and that's just not healthy. The pain and the fatigue are not worth it, either. After they do the colonoscopy/endoscopy they are scheduling me for surgery, so I'm going to need to be as healthy as possible going into that. I think this is all the proof I need that I am indeed Celiac!

Why did I want the definitive diagnosis? I'm the type of person who needs to KNOW things. I thrive on information, numbers, facts...not so much theories and probabilities. I like certainty. I know life isn't about certainty, it's just what makes me comfortable. I feel weird saying I have Celiac Disease when I don't have the data to back it up, aside from a very positive blood test and very telling symptoms. I just graduated from university, so I guess I'm used to having to prove things.

So...8 months later and I'm FINALLY getting the colonoscopy and gastroscopy I need before I can get surgery. I've still been quite ill, despite going gluten-free, so there is some concern that more is going on, but it may just be the damage they are planning to repair. While they're messing around in there they want to do a biopsy do get the "DEFINITIVE DIAGNOSIS". So? Gluten Challenge! Well, after merely a day and a half, I understand why it's called a "Challenge"!!!

I'm wondering if anyone has tips for dealing with any of the symptoms? The nausea seems to be the worst for me so far (haven't got to the big "D" yet...), along with a migraine, fogginess, anxiety, and fatigue.

If anyone found great ways to cope with the challenge...please...SHARE!!!

I've seen that it meets the first Saturday of every month....but when? where? I just moved here and was hoping not to miss it!

Chilliwack, BC CANADA

That sounds amazing, I wonder if I could find it anywhere here in Canada!

Knorr is a Unilever brand. Unilever brands will clearly label any gluten source by naming the gluten grain in the ingredients list. Look for the words "wheat," "rye," "barley" or "oats." If none of those words appear in the ingredients, the product is gluten-free.

Open Original Shared Link

Yes, but this was said about Campbells, too.

It may not say "gluten" in the ingredients, but would say wheat, barley, or rye. Either in the ingredient list or in the allergen statement immediately following it.

It doesn't, though!!! However, I realized yesterday that if a Campbells product is gluten-free that they now actually LABEL IT gluten-free, which is very helpful. However, Knorr has practically the same ingredients, does not provide a gluten-free list on their website, but uses the statement I mentioned about clearly labelling. But like I said, here are the ingredients:

chicken broth (water, concentrated natural chicken broth, natural chicken flavor, salt, yeast extract), sugar, natural vegetable seasonings (celery, carrot, onion), spice and vinegar. MAY CONTAIN TRACES OF MILK INGREDIENTS.

compared to Campbells which I know is definitely not gluten-free, now:

chicken broth (water, chicken stock), chicken flavour, yeast extract, dextrose, salt. (and no allergen disclaimer)

So to me, the Knorr and Campbells are fairly similar ingredients, but Knorr claims it will CLEARLY list gluten ingredients. I know now to only buy Campbells products that are labelled gluten-free, but I will not trust Knorr any longer.

I guess my biggest concern is not just with chicken broth (Pacific and Kitchen Basics are both available where I live, thanks for the tips!), but my concern is:

WHAT DO COMPANIES FEEL IS "CLEARLY LISTED" GLUTEN??

I know there are several companies that make this claim, and now I'm scared to trust it. Sigh. I think that when this claim is made on a company's site, and they do not provide a gluten-free product list, then they should at least in brackets list the ingredients that they feel "clearly indicate" gluten, so that the indication will, in fact, be more clear! Maybe I just won't trust companies that don't put out a gluten-free list anymore?

When I was on the elimination diet I had a chocolate craving and asked at my local health food store if there was any such thing as a gluten, soy, and dairy-free chocolate bar. They called me back and told me the name of it, which I of course forget right now, but when I'm back in there (I go fairly often) I'll check for you!

I'm a little frustrated and confused. Thought I had everything right, but I realize it's a process.

What I'm wondering, is what is meant by a company's statement that if their product contains gluten it will be listed in the ingredients? Gluten, itself, is NEVER listed in the ingredients, from what I've seen. It may be in a disclaimer FOLLOWING the ingredients that says: Contains/May Contain Gluten.

I never questioned this before, but Campbell's is a pretty reputable company and I was under the impression of just that: if it contained gluten, it would be listed. However, I decided to check out their gluten-free list today because I've been craving a creamy soup, and noticed that their Ready-to-Use Chicken Broth and reduced sodium Chicken Broths are not on the list, nor are they tagged as gluten-free when I found them individually on the site. What gives??? The only questionable ingredient in the broth is yeast extract, and maybe chicken stock...BUT if it isn't gluten-free I don't think this is as clearly labelled as I thought was claimed!!! Some yeast extract can be made without gluten, so I assumed if it was a gluteny yeast extract that it would say wheat yeast or something to that affect.

So I've been poisoning myself??? AGAIN??

Please let me know what gives, and if you know of any gluten-free broths that would be awesome, Thanks

I'm wondering if candida could play a part? Anybody have experiences with it? But would candida get worse after going gluten-free? Although my multis apparently aren't gluten-free, just realized, so I guess I can't really say I've been 2 months gluten-free

Sugar and sweet cravings can mean things besides lack of simple carbohydrates.

You listed relative lightweights first, such as rice and fruit. You may have to up the proteins and healthy fats to feel sated, longer. You can also try adding in a form of grain carb which is higher protein than rice - any time you combine gluten free grains,seeds, or nut meals it is better as you get the full range of amino acids your body needs to use the protein. Hence I will mix two or more of the darker, more intense gluten free grain flours together in ziplock bags, ready to use. And I will make it with olive oil and sometimes eggs. My toast might be ugly, but I guarantee it lasts longer than a piece of styrofoam type "white" bread.

If you are not healed up yet you are not absorbing nutrients properly. The body will be trying to regulate certain levels of these chemicals in the bloodstream to function.

Try taking a gluten free calcium supplement, with vitamin D, magnesium, and a B complex. This helps with cravings, also.

Yeah, I'm still healing up, so that could definitely be the case! I've been wanting to add quinoa, but the non-contaminated quinoa is so expensive! Any other grain suggestions?

All carbohydrates are broken down into simple sugars that are absorbed into the bloodstream. The carbs in some foods (mostly those that contain simple sugars and highly refined grains, such as white flour and white rice) are easily broken down into sugar. Whole grains are broken down more slowly and their sugars are released more slowly into the bloodstream. If you are used to eating white bread but it is no longer in your diet, then you have eliminated a daily source of quickly absorbed sugar from your diet - thus your craving for simple carbs (quick sugar).

I NEVER ate white bread...well, pretty much never. Always whole grain bread, pasta, brown rice, etc.

I used to always be a salt fiend, a savory lover, and very very very rarely eat things like chocolate, ice cream, or baked goods. I always ate very healthy and didn't even crave those things.

But since going gluten-free, I'm still eating healthy...just eating the right KIND of healthy for my body now But I find I'm craving all those things now!!!

I don't get it...often when one craves sugar it's because they may be low on carbs...I feel sometimes cravings can be the body wanting something. But I'm eating carbs: fruits, veggies, rice, etc. I'm also eating proteins. And healthy fats.

So what's the deal? Is anyone else experiencing this? I'm 2 months gluten-free now, so I wouldn't think it would still be withdrawal. I'd love to stop these cravings, any help would be much appreciated