HavaneseMom

Hi Everyone,

I just picked up my blood work results, so I could look them over before my 6 month post diagnosis follow up appointment I have tomorrow. I was surprised to see that my TTG IGA level has lowered, but is still high and above the normal range. It was also high when I had blood work done at 3 1/2 months post diagnosis. I had posted a question here about it at that time, and it was mentioned that it should be in normal range around 6 months, and if not, it could be due to another auto immune disease.

Here are my results from diagnosis, 3 1/2 month and 6 months for reference. The numbers for all of these test should be less than 20 to be considered in the normal reference range.

At Diagnosis:

TTG IGA 157

TTG IGG 8

Gliadin AB IGA 170

Gliadin AB IGG 65

At 3 1/2 Months Gluten Free:

TTG IGA 34

TTG IGG 4

Gliadin AB IGA 18

Gliadin AB IGG 19

At 6 Months Gluten Free:

TTG IGA 26

TTG IGG 4

Gliadin AB IGA 12

Gliadin AB IGG 11

My other celiac related numbers have continued to fall to numbers I am very happy with and are all under 20 like they should be, but not TTG IGA. I am wondering what other auto immune issues could cause that number to remain elevated? I would like to bring this possibility up with my doctor tomorrow. I am sure he will say I am probably still getting trace amounts of gluten in my diet somewhere, but I don't think so. Also, wouldn't the other numbers still be elevated above normal range if that we're true?

Thanks in advance!

I can't speak to the histamine issue with the Teflon pan, but broccoli makes be blow up like a balloon.

I can eat a very small portion as a side, but have learned that much more than that will cause me major pain and discomfort!

Before my diagnosis I had searched online about it because I had such bad pain after eating it.

Here are a couple of interesting links about broccoli and the stomach:

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As a waitress and fellow celiac, I'm kind of scared by everyone saying they get salads when they go out. Salads are some of the most likely things to be contaminated! In every restaurant I've worked the station that the salads are made is the same place they make wraps, appetizers, and possibly sandwiches. And when they're busy their hands that have touched flour tortillas and fried food go right in the lettuce and other veggies. It depends on the restaurant, of course, but I see enough that I'd never eat a salad at any place I've worked.

I have mentioned the same thing a few times. I worked in restaurants for years and I never saw a salad station I would trust.

Oh my! Thank you both for that info, I had no idea.

I am wondering -Since you both have worked in restaurants and have an idea of what goes on behind the scenes, what would you suggest that people order when eating out?

Yes, corn is used in so many foods in so many forms. I have been sensitive to it for a long time, but not super sensitive like some are. I found that avoiding foods that are made of mostly corn allowed me to be less careful with the additives on that long list you found, those amounts are smaller. I still get corn in my supplements, (those darn things are hard to find without corn in them!), so I'm working on that one still. I don't get symptoms from them, but I'm learning that it's important not to overdo anything I'm sensitive to. The sensitivities can all start to add up to an overload in the body and start to cause problems with other foods.

It sounds like you have been eating quite a bit of corn in your diet lately (which is easy to do with gluten free products, lots of corn used in those). It may be that you are just over-doing it and if you back off the corn for awhile you may find that you can eat it again, but in smaller amounts maybe or less often. I would stop eating corn for a month at least before trying to introduce it again to give your body a break. Once it builds up, it takes time for it to leave your system.

Thank you for that information!

I think you are very right and I had corn overload. I have been avoiding the obvious corn products for the last four days, and have felt much better than I have in the last two months. My tummy actually feels calm :-) . I'm glad I have been able to see results without having to be super strict and look for all of the ingredients on that long list. I am going to take your advice and make sure I don't overload on any one type of food. It's funny you mentioned that, because I have been eating a lot of chicken breast lately and I noticed it is starting to bother me a bit too and wasn't sure why. I think I may be starting to overload on that too. It sounds like everything in moderation is best for some of us.

Also, if you are still looking for corn free supplements, I use and really like Thorne Research supplements. Their allergen info is the third question down in this link:

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You can purchase them through amazon or a their authorized online retailer is www.needs.com , they can also tell you who carries them locally if you give Thorne a call.

It's hard for me to find supplements that don't upset my stomach, but I have had pretty good luck with theirs so far.

I'm in the same boat as you too. It's 3:30 in the afternoon on a Saturday and I'm in my jammies.

I am going through a particularly hard rough patch in my health right now for some unknown reason. Seems like I should be feeling better. I so am thankful that my hubby can provide for us, since I have had to cut back from my 45 hour a week job to about a 5-10 hour a week work from home job about a year ago. I can't imagine being able to get up and go to work everyday at this point. I actually haven't been out of the house at all this week, but tomorrow I am hoping to go to the grocery store if I feel better. Not too exciting of a life at this point, but am hoping this will pass soon. I also have my two fur babies that who are always happy to give me a cuddle and a kiss when I am feeling down, and they help being stuck at home feel a little less lonely.

I do get envious when I see people on Facebook posting their travel pictures or when I hear people talk about all of the running around they are doing. I can't imagine having that kind of energy-but maybe someday? I actually had planned a couple of low key getaways for the spring and summer, and am wondering how that is going to work out. Hopefully I will feel better by then and will be able to go.

Thank you for posting this. I'm sorry to hear you are feeling so bad, but I have been wondering if there are others out there in the same boat as me too. I hope you feel better soon.

Corn makes me swell/bloat even more than gluten, I think.  Yeah, it is overwhelming looking at the ingredients that can be corn derived.  One has to read labels  I buy meat straight from farmers, grow my own vegetables, and do canning.  If you go to a local farmers market you may find some connections.  Ask questions before buying anything.

 

D

Thanks for the advice!

I have been reading through some of the other threads about corn, and it sounds like it is a very serious offender to some people like yourself. For now, I am going to go grain free for a while and just avoid the obvious corn ingredients and hope that will be enough for me to see a difference. There are so many more hidden corn ingredients than gluten! Gluten is easy compared to corn. I can see why you would buy meat from the farmers, grow your own produce and can.

I had a couple of scrambled eggs with some natural roasted turkey tossed in for breakfast today, and am feeling better than I usually do after breakfast, but am still wiped out after yesterday's episode. Hopefully I will continue to feel better with the elimination of grains.

Hi Everyone,

I have been gluten free almost 6 months now since my Celiac diagnosis. In that time, I have only felt well about 3 weeks total. The good days have been scattered around, but in the last 2 months, I have only had a couple of good days. I have been scrutinizing my diet and have tried other eliminations, but am starting to think that maybe corn might be my problem.

I have noticed that I don't feel well after breakfast, which is often certified gluten free corn based cereals with almond milk. This morning after breakfast I felt so bad! I had horrible nausea, weakness, the shakes and extreme abdominal pain which all left me exhausted. My torso from my chest to my hips feels like I was beat up and is now sore to the touch. After this happened, I though about some of my worst episodes lately and I realize I had ate corn pasta, corn cereal or corn before them.

I was wondering if corn could really be making me feel so bad when I should be feeling better at this point? I was curious and searched the web for celiac and corn and was shocked at this article I found:

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I had no idea that this was a known problem for some people with Celiac!

So now I am going to remove corn from my diet to see what happens, but was surprised to find out it is hidden in so many products. I am wondering if people have success eliminating just the obvious corn containing foods, or do people typically have to remove all of the offenders from this corn allergen list to see positive results?

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This list is long!

Thanks in advance

Hi dmarie725,

I have been gluten free for almost 6 months now and I still burp like crazy. It doesn't really seem to be connected to what I eat either. When I woke up this morning, I burped probably 20-30 times within 15 minutes after getting out of bed and I hadn't had anything to eat or drink yet. I burp a lot! I do think that it is celiac related for me. Since I went undiagnosed for most of my life, my digestive system is a mess and is still in the healing process. I actually just talked to my GI doctor about the belching and they want me to try the FODMAP diet for a couple of weeks. They said it often helps with digestive gas and bloating. I haven't started it yet, so I can't say if it will work, but here is a link to some info regarding it if you are interested:

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Good luck!

Hi Ami,

I'm glad to hear you are feeling so much better after going gluten free!

It can be hard for people understand how sensitive our bodies are to gluten and the damage it can cause us. I don't think it is something that people can fully understand unless they are in your shoes. I usually just toss out a simple fact, stand firm and then change the subject.

Like with your friends text, I myself would just reply something like - Yes, I have to be so careful about cross contamination now or I will get sick. Or when your Aunt asked why the soy sauce wouldn't be safe, you could just say something like, soy sauce is traditionally made with wheat and it will make me very sick if I eat it. Usually if people don't drop it, I get more technical and tell them about the damage it will cause to my small intestine and the nutritional deficiencies and other issues it will cause. People honestly don't seem to want to hear about the details and will say something like - Wow, I didn't realize you need to be so careful, and then they will drop it.

You are still very new to being gluten free and these situations will get so much easier for you to handle in time. Good luck!

Biokleen says all of their products are gluten free. The fourth question down in this FAQ's link says so:

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Their dish soap is good and I LOVE their Spray & Wipe All Purpose Cleaner so much that I buy it by the case from amazon. It's great if you don't like heavily scented products.

I don't know if cleaning products need to be gluten free for us, but it does give me some peace of mind using them.

Hello,

If it were me, I would call and ask them to mail or email a copy of both your blood test results and your biopsy results. It sounds like the girl you spoke with on the phone wasn't very informed, and there may have been some terminology on the report that she didn't understand. It's always a good idea to get copies of all of your results and keep them in a file at home. It would be nice for you to know exactly what the report says sooner than the 3 weeks you have to wait for your appointment.

Hi curiousgirl,

Have you had your blood work ran lately to see if you may have been accidently glutening yourself, like you mentioned? It might be helpful for you and your doctor to find out if any of your celiac related numbers are elevated. Best of luck to you.

Again,    if there are no obvious crumbs or slimey stuff on these things, it should be no problem. I mean let's face it... we go out into the world where people eat gluteny foods all the time, touch handles, door knobs, shopping carts, etc. It's not like it is an invisible filmy germ that passes from person to person. 

Do not overthink this too much, hon.

I will try not to over think it!

I think since my recovery has been slow going, I now tend to think about every little thing that could cause a problem or possible flare up. I guess I am a little paranoid about it, but I am going to try my best to reel those thoughts in and not think that way :-)

Thanks for the advice!

It sounds like it will be ok, as long as it's a peck on the lips. If it is more than that, I will ask him to brush his teeth first :-). He comes home for lunch every day, so I just wanted to make sure a peck goodbye after lunch and after he has wiped his mouth won't be doing me any harm.

As far as what I was asking about him spreading gluten around the house - if he were to for example, eat a hot dog or a sandwich and then for instance touch the microwave handle, fridge door, cabinet door, the remote control, etc. after touching the bread, it should be no problem, right? I do wipe these things down frequently and wash my hands before eating, but I am admittedly a bit of a germaphobe, so I know my mind thinks a little bit differently about things.

Thanks again!

Hi Everyone,

Please excuse the silly name of this topic, but this is how I refer to it at home:-).

Unfortunately, I do not have a gluten free household and would of course like to avoid cross contamination from my gluten eating husband. I am wondering how strict we have to be about this?

I have asked him to wash his "gluten fingers" after eating gluten, but it's not a habit yet and doesn't always happen. Do we have to worry about residual gluten being spread around the house through hand contact, even if we wash our hands before eating?

Also, I have asked him to wipe his "gluten lips" very well after eating, before giving me a kiss. Is this ok if it's just a peck or two on the lips? For example, he had a grilled cheese sandwich for lunch today, when he was finished I did see him wipe his mouth very well and about 5 minutes later he gave me a peck or two on the lips before he went on his way.

Do either of these things need to be a concern?

I am finally starting to see some excellent progress after giving up dairy and nightshades, and don't want any potential gluten cross contamination to get in the way of my improvement.

Thanks in advance!

w8in4dave - I am in Grand Rapids too!

I think a lot of places around here still have lots of learning to do. I'm not going to eat out for a couple more months, then will be very selective if I do. You probably already know this, but I was surprised to find out a lot of places add bread/crumbs to their hamburgers to make them moist and softer. I went to a Christmas party downtown at Stella's and asked if a burger without a bun was gluten free and he said nope - we add gluten to the meat to make it taste better! I don't know how common that is, but I never would have imagined that.

I have been struggling to loose weight too.

For some reason, I gained about 30 lbs during the year before my diagnosis, without changing any of my eating/exercise habits. My energy is quite low, so I don't exercise much, but have tried calorie counting, low fat, etc. and my weight wasn't budging.

Well... I decided to give up dairy because my pre-diagnosis symptoms weren't improving as much as I thought they should be, and believe it or not, I lost 5 lbs in the first week without even trying! My stomach is much flatter and I feel much lighter and more energetic. I know everyone's body is so different and I don't know if you are eating dairy or if it would make a difference for you if you gave it up. I was so surprised at the difference it made for me, so it's pretty obvious my body doesn't like dairy.

Good luck!

Hi Coffngrl,

I'm sorry to hear you had another bad experience with a doctor. He is obviously not the right match for you and I hope you will be able to find one that you like soon. I found this older thread that had recommendations for doctors in NC. There are a few mentioned, but I don't know if any of them are near you.

https://www.celiac.com/forums/topic/13214-north-carolina-doctor-looking-for-one/

Good luck and I hope you find the right doctor soon.

Thanks so much for all of the advice and support! It's nice to know I am not alone in feeling this way.

I am going to start making special meals once in while and I'm sure it will help make up for not being able to eat out.

I didn't really eat out a whole lot before, but like others, that convenience aspect once in a while will be missed for sure.

It was kind of a funny coincidence, but after I wrote this, my husband decided to stop at Taco Bell for dinner. He doesn't eat out much anymore so he was pretty excited. When he got home and unpacked his food, they had completely messed up his order and he couldn't eat any of it because of the special diet he is on. So, it helped me realize that it's not such a big deal, since the food isn't always that great, and around here they seem to mess up orders a lot!

I am going to look in to the Koolatron car stove lunchbox for day trips too. I had no idea they made such a thing!

Hi LolaBean,

I'm glad to hear your doctor is looking in to your symptoms further. My doctor had ordered a ultrasound of my gallbladder and pancreas at one point due to my symptoms, but nothing showed up and after a quite a bit of time, I finally went to a GI doctor and found out it was Celiac. I waited what seemed like forever to get a referral to a GI doctor, and come to find out, my insurance doesn't actually require a referral for specialist! Try to see a GI doctor ASAP, if you feel like your doctor is dragging their feet on this. The longer you wait, it often takes longer to heal.

The dizziness you mentioned seems to be a pretty common celiac symptom. Mine started out as dizziness when getting out of bed in the morning and escalated to the point that I could even ride on the highway because the motion and speed would make my head spin like crazy. If you search this site or do a Internet search for celiac and dizziness, vertigo or gluten ataxia, I think you will be surprised at how common this symptom is for Celiacs.

Good luck and I hope you feel better soon.

Bartfull - Thank you for that info. I went that site and there were about 10 restaurants listed in that area. I will wait until the last day to try one like you suggested, just in case

FruitEnthusiast - Thanks for the kind words. It's nice to know that it will get easier. I will try my hardest not to focus on this and will enjoy my time away!

Hi Bartful,

Yes - We have a PF Changs and Outback here! I will give them a try for sure.

I will try not to think about it too, like you mentioned.

I think it might be on my mind more right now because we have a vacation coming up. We always go to this little resort type area for a week every year. They don't have many chain restaurants there, and we always would plan which of our favorite restaurants we would eat at on our drive there. I really don't think I can trust any of them to make me gluten free food. We will have a full kitchen where we are staying and I will probably freeze some meals to bring too. It just won't be the same as before though, but I know this is just one of those things we have to deal with to feel better. I'm just surprised at how much it bothers me when I think about it, but I'm guessing this first year of making these adjustments will be the hardest.

Thanks so much Bartful!

It's nice to know I am not alone in feeling this way.

I know I have to get over my mental road block and trust a restaurant at some point. I just am so afraid of getting glutened. I'm not 100% better yet, and I don't even know what it will feel like if I get glutened. Hopefully it won't happen, and if it does, it won't be too horrible!

Hi Everyone,

I have been gluten free for 5 months now. The first few months I accepted that gluten free was my new life and was so happy to finally know what had been making me sick all of this time.

For the last month or so, I have been really down about never being able to eat gluten again. It's no problem at all for me to think about eating gluten free at home, but when I think about all of my favorite restaurants and the foods I can never have at those places again, I get really down. I'm not typically someone that feels depressed or down, but this is really bothering me for some reason. Not only can I never eat my favorite foods at those restaurants, I don't think I will ever fully trust someone to cook a gluten free meal for me at a restaurant. Being a curious person, I often notice what's going on behind the scenes, and for the most part I can't imagine that my food won't get cross-contaminated. So, I also feel like I have loss the freedom to ever enjoy eating out, because I will always worry about getting glutened.

I am wondering if others have experienced these feelings and how you dealt with it? I kind of feel like I am going through a little mourning period over loosing this aspect of my life. I know my life will be better now, because my health will be better, but I associate so many good memories with these places...

Sorry to hear you are having these issues.

I had the genetic testing about 7 years ago. If I remember correctly, they took about 5 tubes of blood. When I asked my doctor,for the test he said the protocol was to send me to genetic counseling before having the blood work taken. I told him I wasn't interested in doing that unless it came back positive, so I just had the bloodwork done and it came back negative. I had the test because my brothers little boy has cystic fibrosis and I wanted to find out if I was a carrier in case I had children. My brothers son wasn't screened at birth, but became very ill from it shortly after he was born. He was in the hospital sick for a whole month before they finally tested him for CF and he was diagnosed. I hadn't heard of adult diagnosed CF before, but was curious and did a Internet search too. It seems like "sputum" production is often present. I know my nephew has lots of sputum in his lungs and has to wear a vest that shakes it loose so he can cough it up every day. He also takes creon before meals for absorption. I think there is a active CF community somewhere online, similar to this celiac one. They might be able to help you too. Hopefully this is all celiac related for you though and you will get better soon.