HavaneseMom

Hi Celiacandme,

I was diagnosed and have been gluten free for about the same amount of time as you. My numbers started off pretty high and I was retested at 3 months. Only one of my numbers was still elevated, but I am still struggling like you. I am pretty sure it will take my body a couple of years to heal, since I remember symptoms as early as 3 years old and wasn't diagnosed until 40. It sounds like you were very sick when diagnosed, so I would think your body is still healing and adjusting. It is so hard to be patient when we are doing everything we can to be healthy.

A nurse at my GI doctor explained to me that it also takes so long to heal because our digestive system never gets to rest. She said if you break a bone they put a cast on it and you rest it and it heals, but with the digestive system it has to constantly keep working and processing, so it never gets a chance to rest and takes a very long time to heal. That made a lot of sense to me.

Hang in there and I hope you feel better soon.

Sounds good Gottaski. Reading your profile, you must have done so many eliminations!

I'm pretty sure white potato is an issue for me. I have horrible stomach aches and swelling after I eat them.

I agree, some of the foods toward the bottom of that list I have never come across, so no problems eliminating them

I found this list online of Nightshades that I referring to and was going to use for the elimination. Is this incorrect?

Do you think I could just start with eliminating the main four (tomatoes, potatoes, eggplants and peppers), or would I need to do a strict elimination of all the items to see the full effect?

Here is the list of Nightshades I found:

Tomatoes

Potatoes

Eggplants

Peppers(bell peppers, banana peppers, chili peppers, etc.)

Red Pepper

Seasoning (paprika, chili powder, cayenne, curry, etc.)

Tomatillos

Pimentos

Pepinos

Tamarillos

Goji Berries

Ground Cherries

Ashwagandha (an ayervedic herb)

Tobacco

Read Labels: terms like "spices" and "natural flavors" often contain the above seasonings

"Starch" often comes from potatoes

Thanks so much for the ideas Bartfull! The italian spice mix and the others sound yummy.

I just went and rechecked the dressing labels and the Organicville Dairy Free Ranch is nightshade free! I will try not to use it for a while though since it's processed.

It was my husbands Marzetti Simply Dressed Ranch that had "spices" listed, and not the individual spices named. Quite a few of the bottles I just checked only said "spices". I'm kind of surprised that they don't have to be more detailed about which "spices" are in their products. I'm guessing it varies by manufacturer how specific they get when labeling the spices used in their products.

I will pick up some single spices then. I will have to look for some Nightshade free recipes to mix single spices, since I no zero about spices - well except salt and pepper .

It sounds like this will be a lot of very plain eating. No more barbeque sauce, ketchup, dairy free ranch dressing etc...

I have had burning tongue too for many years.

I read that iron deficiency anemia (which I have) can cause it, so I am hoping that it will go away as my iron levels increase.

I see that you have reflux like me too. The other thing I have noticed is that my tongue burns more when my reflux/gerd is flaring up. I'm not sure, but have wondered if maybe the acid is coming up when I sleep and then is burning my tongue. Might just be a coincidence. 

I am going to read up on the sulfite allergy, like greenbeanie suggested too.

Hi All,

I am pretty sure that I am having a reaction to Nightshades since I feel really ill after eating tomato or white potato, and have been having all of the other typical symptoms. I am starting a 30 day elimination today to see if my symptoms improve.

I am wondering if any of the Nightshade free people out there could suggest some spices or condiments that they know are safe to use?

I was just looking through my pantry and noticed most of the labels just say "spices" in the ingredients list. I am assuming those are not safe to use since there could be any combinations of spices in there, including Nightshades.

This is going to be a tough elimination, but I have a good feeling that this is my lingering problem. After reading up on it, it seems like these Nightshades can be a problem for any person with auto-immune issues.

If there are any other Nightshade free favorites out there, please let me know.

Thank so much!

I can't wait to try all of these ideas and I am so glad I asked.

On top of being a bad cook, I am not at all a creative when it comes to cooking and never would have thought of any of these ideas. I'm hoping as my cooking skills improve, I will enjoy cooking more too. I think I need to spend more time browsing the cooking/food related topics in this forum. There are so many good ideas and recipes!

Thank you! These are great ideas and things I never would have thought of. It sounds like using broths as a base and adding interesting things to it can change the flavor quite a lot. I will be trying these suggestions soon.

Hi Everyone,

Let me start off by saying, as of right now I am a terrible cook and the simpler the recipe the better!

I have been trying to home cook more instead of eating gluten free microwave meals.

My favorite thing to make is a big pot of either gluten free noodles or rice, with either turkey, chicken or beef added, then some veggies thrown in it. I like to do this in a big batch and freeze up my own microwave meals.

I'm just wondering if anyone has any ideas for a dairy free sauce to toss in there? I have been using gluten free broths, with a little Mrs. Dash and salt. It's pretty boring, but since my stomach is sensitive I don't mind that, but would like other options too. Not to make this too difficult, but in addition to dairy, I can't eat tomato, garlic or onion right now. Any ideas for sauces for flavoring that I could add would be appreciated.

Thanks!

After I wrote the above post, I decided that wasn't great advice to suggest you call the lab for these results. When I got my positive results for celiac, my doctors phone nurse called and told me I tested positive for Celiac Disease, asked if I had any questions, and the call was at the most two minutes long. I would have much preferred if my doctor would have called me in for an appointment and taken the time to explain everything to me. Monday isn't too far away and it will give you a chance to think of lots of questions to ask your doctor. Hang in there

Did you have the blood drawn at a lab or at the doctors office? If you had it drawn at a lab, they might be able to get you a copy of the results. I always ask the lab to mail me a copy directly of my test results. They just have me fill out a form with my address and mail the results to my house then. If you had it drawn at a nearby lab, you might be able to call them and see about getting a copy. You would probably have to go and fill out the release form, but I'm guessing they could give you a copy right then, but I would definitely call them first. That's just an idea, but there may be some reason why your doctor wants you to wait for the results until you see him on Monday. I would call the doctors office back and try to probe for more info first though. I hope your son feels better soon.

Hi VeggieGal,

I stumbled across the info on tea when I was trying to research why my energy wasn't improving. There are lots of articles on the web about it, but my docs never mentioned it. I was drinking lots of tea throughout the day and with my meals. It's supposed to be healthy, so I saw no harm in it until I discovered it could be affecting my iron absorption.

From what I've read, you don't have to completely give it up though.

It's recommended that you drink it 2-3 hours before or after meals or taking iron supplements, to help improve your iron absorption. I would still drink it between meals myself, but I discovered it gives me a stomach ache, so it wasn't hard for me to give up.

I hope your energy improves soon and that the after effects from your infusion have gotten better.

Thanks GFinDC!

When I got my diagnosis, I thought all I would have to give up was gluten and I would miraculously recover. It's been a surprise to find out that there is more to it than that for some of us. I guess when a persons digestive system gets damaged over and over again for years, it's hard to digest lots of things. I had no idea about the Amy's meals! I will keep an eye on that for sure. I have started to cook a little over the past couple of weeks and will take your suggestions and use them. The links are great too! Thanks so much

Hi VeggieGal,

So sorry to hear you are having bad after effects. You might already know this about iron, but I saw your name and thought It was worth mentioning. You had mentioned your caffeine intake and I was wondering if you drink a lot of coffee or tea in particular? The phenols in those drinks can greatly reduce your ability to absorb non-heme iron, the type that comes from vegetarian foods. I quit drinking tea altogether and I really think it has helped me with my anemia. I do miss tea though, but I feel much better.

Here is a quote from Univeristy of Minnesota article:

"Coffee and tea are widely consumed with meals or directly after meals, while some people prefer to

consume these beverages between meals. However, both beverages have a high content of phenolic

compounds, which strongly inhibit the absorption of non-heme iron. For example, a cup of tea with a

meal reduces iron absorption by about 75% depending on the amount of phenolic compounds per cup.

The amount of phenolic compounds depends on differences in the amounts, brands and steeping times

used to prepare the tea. A cup of coffee with a meal has been shown to reduce iron absorption by

about 60%."

Here's a link to the full article:

Open Original Shared Link

Thanks for all of the advice!

GFinDC, I have seen some of those things mentioned, but not put together nicely in a list. Thanks!

I am a horrible cook, so I do eat a lot of Amy's gluten free meals, but I will try my hardest to eat less processed foods...and the sugar.

It's hard to give all of these things up, but I know it is for the best

Hi Greg,

I have the gnawing symptoms like you and they drive me nuts. Out of all of my Celiac symptoms, that is the one that effects my quality of life the most. I can totally see how it would have effected you so much that you lost your job. It is a very draining type of pain and can wear a person down quickly. Mine can range from a mild gnawing hunger type pain, to a more intense feeling that I describe as feeling like someone is slowly rubbing a cheese grater up and down inside my stomach, to the most intense pain that I would describe as feeling like a mouse is trying to gnaw and scratch it's way out of my stomach. I know that's a really strange way to describe it, but that's what it feels like! Is your pain similar?

I notice that you mention that you have gastritis, I have GERD and I too am wondering if maybe it is what's causing the gnawing pain. I have definitely been able to identify some triggers foods, so these are mine and might be some for you to watch out for: coffee, tea, carbonated beverages, milk, ice cream, too much cheese at once, broccoli and tomatoes. Have you noticed that any foods or beverages make your pain worse? Dairy is a real problem for a lot of people with Celiac Disease and is one you should watch our for. One of the hardest parts of these types of issues is trying to figure out the exact problem! Something that helps a little is if I take a dose of liquid antacid. It seems to coat the stomach and make it feel a little better. I am on Prilosec long term too, to try to help the problem. I couldn't tell from your post if you are still taking Prilosec, but it doesn't really keep the gnawing away for me.

I have to say, Congratulations that there was no evidence of Celiac Disease when you had your endoscopy!! That's fantastic and I hope you will feel better soon.

It sounds like others out there have the same thing happen as me too. I hope it is just part of the natural healing process and I am not getting glutened from cross contamination. I am so careful, but I know it will never be completely avoidable.

1deperateladysaved, As time goes on I am experiencing exactly what you said, I am having the highest highs, followed by the lowest lows. I can't wait for those lows to disappear, because the highs are wonderful!

I just want to say that this community is amazing. It is so comforting to know that their are others out there who have gone through the same things and are so generous to reach out with answers that even doctors can't give and provide support. I'm so thankful I found this forum

Bartfull,

I never did confront him, but my lab results and everything else that I have had done with my GI doctor since has been forwarded to that very bad doctor. I have told him off so many times in my head, but could never get the courage up to do it in person. I haven't seen him since my diagnosis and never will again. At least I learned a very valuable lesson and I will never trust a doctors opinion based on a 30 minute appointment over what I am feeling every single day. I do wish I would have been more pro-active and demanding, so anyone reading this in a similar situation, please demand the testing or find a better doctor who will listen to you and test you for Celiac Disease!

I've also been gluten free since early October.  I haven't experienced what you descibe but I know from reading accounts from others that this is very common.  Over time you'll find you have more good days than bad - and then eventually you'll realize you only have bad days when you've actually been glutened.  I don't know the reason for this, but I suspect it is because it takes so long to get rid of the antibodies.  I read somewhere that they have a 3 - 4 month half-life.  So after 4 months you have about 1/2 the number of antibodies that you did when you went gluten-free.  The villi inflammation/damage can come and go in Celiac people before they go gluten-free so it seems reasonable to me that it would continue to come and go until all of the antibodies are out of your system.  And if the villi inflammation can come and go then it follows that your symptoms would come and go too.  (Just theory on my part, but it makes sense to me.)

Thank you for all of this information. I didn't know about the antibody half life and inflammation.

What you are saying makes total sense and would explain the feeling good for a while, then bad for a while cycles I seem to be having.

I just get so excited when I have the stretches of time when I feel so great. Then when I start to feel sick again I feel like I have done something wrong and try to figure it out, but never can. It sounds like in time, once the antibodies taper out of my system, I should stop having those bad periods of time. I can't wait!

Thanks again, this was very helpful.

Oops! I see they removed the name of the online retailer I mentioned. I didn't know I couldn't mention their name here.

Hopefully you will know which one I meant. The online retailer that makes and sells the Kindle.

Best of luck to you!

Yummy! Your baked goods look so delicious.

I was going to suggest exactly what you said. Maybe you could get a job at a gluten free bakery in your area for a while and see what it is all about before taking the plunge on your own.

Be careful about sharing your recipes with them though. I'm sure you worked hard to perfect them. 

Maybe a bakery would offer to buy the recipes from you??? Or maybe you could create a gluten free baked goods cookbook and sell it.

Amazon.com lets people publish their books for digital Kindle download. Go to Open Original Shared Link for more info.

Your knits are adorable. Have you tried listing them on Etsy? I have bought probably 40 knit sweaters for my pups on that site.

Good luck!

Hi Everyone,

I have been gluten free since I was diagnosed in October, so about 4 1/2 months now.

I have been experiencing something that seems really strange to me and I am wondering if any others have had this happen during their early stages of healing?

I will feel really great and have very minimal symptoms for a few weeks and think I am getting so much better. Then out of nowhere, I will feel miserable and have all of my pre-diagnosis symptoms for a couple of weeks. The times frames may vary, but basically I will have a stretch of time where I feel great, followed by a stretch of time where I feel horrible. This has been happening consistently since the very beginning of being gluten free.

I am strictly gluten free (as far as I know), so I don't suspect that I am getting glutened. I just feel terrible when I have these flare-ups though. I do also have GERD, but am taking Prilosec for that and don't think it would make me feel this bad, but maybe? I also just gave up dairy to see if that will help, although I wasn't eating much of it before.

I have read in the books etc., to allow 6 months to 2 years for full healing, so I'm not expecting to feel 100% yet. It is just so strange to me, and discouraging that I will feel great for a while and then go back to feeling how I did before I went gluten free.

Did anyone else have this back and forth pattern in beginning?

It makes me so sad to hear that this is happening so often. It's a simple blood test, why don't they want to let us take it?

I suffered for so many years because my doctor convinced me that all of my digestive issues stemmed from stress and anxiety. I asked him three times over the years to test me for Celiac Disease and he refused. The last time, he was obviously irritated and told me that I choose him as my doctor and need to trust him to manage my health care. I finally went to a GI doctor, although my primary doctor tried to convince me they would not be able to help me. I saw the Physicians Assistant because the GI doctor was not available and I never even mentioned Celiac Disease to her because I had been so humiliated before. Within 5 minutes of talking to me she said she wanted to test me for Celiac Disease and I of course tested positive. I will forever be grateful to that Physicians Assistant because she actually listen to me.

Your doctor sounds bad like mine. I am still looking for a new one, and hopefully you will find one that will be willing to do your follow blood test soon.

I noticed that you mentioned that you are eating Boar's Head turkey and ham. Are you getting that sliced from the deli counter?

The reason I ask is because last time I ate some Boar's Head meat sliced from the deli counter I felt very sick afterward. I looked in to it, and found that while their meat is gluten free, sometimes the slicer may have been used on another deli item that contained gluten earlier in that day. Some of the lesser brands that the deli offers could contain gluten, and if they were sliced on the same slicer, your meat could be cross contaminated. It was recommended in the post I read that we place a order with the deli to have them slice our meat first thing in the morning when everything is clean and sanitized.

I hope you will feel better soon.