What Am I Doing Wrong? If Anything...

[DesertDogs]

My question:

Is it possible for symptoms to elevate during a recovery from gluten, even though no additional gluten was ingested? In other words, is it common that recovery is a linear process or are there 'bumps' along the way, even without eating additional gluten as it works its way out of my system?

My history:

In early February, my symptoms appeared. I had diarrhea EVERY morning. After about 2 months, I started on elimination diets. Nothing helped until I went gluten-free. After one week, my symptoms were almost under control. I took a supplement and the gelatin capsule was not gluten free, so my symptoms reared back again. The pattern repeated. After a week, my symptoms were almost under control, when I ingested some gluten in Dannon Greek yogurt. Lesson learned. Symptoms returned with a vengeance.

At this time, my Dr. tested my blood for an enzyme (I don't know which one) and his report was that it was "normal". In other words, no Celiac. Because of my regularity of symptoms, I was convinced that this was a false negative. I have another appointment in late May.

It's been a week now, since the Dannon yogurt and my symptoms have been steadily improving over the past week (as expected). However, this morning, my symptoms seem to have at least partially returned. I'm devastated! I didn't eat any gluten yesterday! The only "new" things I had are a new flavor of Oikos Greek yogurt and some bottled lemon juice, both of which say gluten-free on the label.

I have not gone more than a week without accidentally ingesting some gluten, but each time I've made it through the week, I was almost normal. Will I ever get back to normal?

Thanks you sincerely for any thoughts you may have.

[IrishHeart]

The problem may not be gluten, but the lactose in the DAIRY!

You should eliminate dairy and see if you improve.

Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi.

When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc.

After you go gluten-free, the villi will heal in time and most people are able to tolerate dairy foods again. My doctor suggested no dairy for 6 months.

I do not know what enzyme is associated with testing for celiac??

[rosetapper23]

Your doctor is probably unaware that there are four different types of tests for celiac, and experts recommend that a minimum of two tests be done. However, since you've been eating gluten free for a few months, you may end up with a false-negative. Since you know that you can't eat gluten, you know now not to eat it. I also agree with the above information about being sensitive to dairy, which may only be temporary. For many people with celiac, soy is also a problem. You might try taking L-Glutamine, which helps heal the gut, since another reason why you may be experiencing occasional setbacks is because it takes a while for your gut to heal. Mine took nearly 18 months to heal on a strict gluten-free diet. Don't give up!

[DesertDogs]

The problem may not be gluten, but the lactose in the DAIRY!

I've been eating yogurt every day. Last night was just a new flavor.

However, since you've been eating gluten free for a few months, you may end up with a false-negative.

I've actually only been gluten free for a week at a time. The gluten I ate was unintentional. I have to be more careful.

... since another reason why you may be experiencing occasional setbacks is because it takes a while for your gut to heal. Mine took nearly 18 months to heal on a strict gluten-free diet.

Wow! I had no idea it could take that long! But I'm not giving up. Not a chance! I can't go back to that.

Thank you both for your responses.

[IrishHeart]

I just want to clarify what I meant...

Those products may well be gluten-free, as indicated.

If not, try to choose a yogurt that is definitely gluten-free, like chobani.

You eliminate gluten, and you feel better, but if you do not eliminate dairy, and dairy is a problem, you will continue to have digestive issues.

Take them BOTH out for two weeks and see if you can get through more than a week without feeling yucky.

Just a thought!

okay, best luck!

[Takala]

Yogurt that was allegedly 'gluten free' got me so many times during the initial stages of the grain free diet I was on, I said to **** with it for a very long time. Meanwhile I could eat cheese with very few problems. I think a lot of these yogurt makers don't get all the lactose out, or add powdered milk or something else like it, as thickeners later in the fermentation process, and this stuff does not get the lactose converted. And there is probably some problem with cc from flavoring and not really getting lines cleaned or something.

Be careful with making sure any supplement you take is really gluten free. It is too easy to think supplements are going to help when they are doing the opposite.

[DesertDogs]

If not, try to choose a yogurt that is definitely gluten-free, like chobani.

That's what I'm eating. Chiobani and Oikos. They are both marked as gluten free. But I will take them out to test. My husband is lactose sensitive, but he can eat them with no problems. Our bodies are so strange! Thanks again!

Be careful with making sure any supplement you take is really gluten free. It is too easy to think supplements are going to help when they are doing the opposite.

I ordered a gluten free supplement but I'm waiting to start on it until I get my functioning working right. My diet is very restricted right now, so if I cut the yogurt out, maybe I can get back to normal functioning again.

I appreciate all the responses so much! I can't tell you what it means to me to have a group of experienced people to talk with! I'm so new to all of this.

[cap6]

I agree with cutting out yogurt - and all dairy for awhile. Yogurt has been a no go for me from the start. I am 13 months into this and while I can now eat a limited amount of cheese I am still unable to eat yogurt. Does me in every time. It all just take time to heal

[dilettantesteph]

Some people, like me, react to some things that say gluten free on them. It can be from another ingredient or from cc. Keep a food diary of what you eat and when you have reactions. Stop eating things which you react to. Only eat one new thing a week as it can take that long to notice a reaction. Good luck.