Greasy Diarrhea Despite Gluten Free Diet

[enolah]

Hi, I'm new here. I'm asking on behalf of my teenage daughter who has been on a gluten-free diet for about 6 weeks now. She was feeling so poorly, we decided to just try the diet since the doctor couldn't schedule the endoscopy for a few months! We plan to have her go back on gluten before the endoscopy is done. Anway, here's my question:

How long should it take for her diarrhea to resolve? Her pain/cramping is mostly better but she continues to have bulky, greasy stools almost every day. We have even cut out all dairy.

We are not a gluten-free household, but all dinner entrees, desserts, etc. that I cook for the whole family are gluten-free. She has her own margarine (earth balance), peanut butter, etc. I am meticulous about keeping her utensils separate, etc. She has had some accidental dairy exposure in some Pamela's cookies that have butter listed as a minor ingredient, but it's hard for me to believe that traces of dairy would cause her continued symptoms.

In a week she will purposely break her diet because she'll be in a remote underdeveloped country and will have to eat whatever is available. Besides, in another 2 months or so, she'll have her scope. Her endomysial IgA almost 2 years ago was negative and for some reason her GI doctor didn't want to do any other blood testing, just the biopsy. Maybe I should press to have a ttg and HLA test done.

[GlutenFreeManna]

What is her typical diet like? Do you make everything from scratch and use mostly whole foods or do you have a lot of packaged "gluten free" foods? She could still be getting gluten in trace amounts or she could be sensitive to something else that is in many gluten free foods (soy, corn, rice, tapioca, etc). Many of us have additional food sensitivities/allergies show up when we go gluten free.

Also have you checked the non-food items she uses? Toothpaste, mouthwashes, medications and vitamins etc are obvious. But anything that may come in contact with her lips at some point could gluten her. Shampoo can get in her mouth in the shower; hand soaps she uses to wash with then come off if she eats something messy and licks her hands.

Recovery time is also different for everyone. It depends on how much damage you have. Many feel better within a month, but many also find other food intolerances or have lingering problems that could take a year or more to resolve. I have only been gluten free for about 7 months and I am still noticing new improvements to my health.

Regardless of all this, she should not go gluten free if she has a biopsy coming up. She will need to eat large quantities of gluten for about two months to have an accurate test result. Even then the biopsy can often miss the damage or she can have no damage and still be gluten intolerant.

[GFinDC]

Scott (the board owner) posted this link recently.

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This is a good reason to stay away from the gluten-free products at the start of the diet. Once she has been on the diet for year or so she should be able to recognize when a food item is bothering her.

Greasy stool could be a sign of gall bladder problems. There are several members who have had gall bladder problem show up. Some of them had their gall bladders removed years before they found out they had celiac disease.

I'd suggest not having her gall bladder removed unless she has to though. If her gall bladder is the problem, it might improve after she has been on the gluten-free diet a while.

She should come here and do a search on gall bladder and read some of the threads by other members.

There was another member a while back who went on a trip to a developing country for work with a team. She has lots of problems because they all used a shared kitchen and the other team members had no understanding of celiac disease.

If her doctor won't test her blood or schedule her endoscopy earlier, find another doctor who will. Putting her back on gluten for challenge before testing could be very unpleasant and possibly dangerous to her.

Do a search con gluten challenge here and read some threads about it. when searching, it helps to look for the threads with lots of replies. they usually have more info.

[enolah]

thanks for the replies so far. Yes, her diet did contain foods marketed as "gluten-free." I also wondered if she was getting trace gluten from those foods. I suppose she could be having gall bladder problems, but her pain hasn't been typical for that. Hers is lower abdomen cramping and frequent nausea along with frequent diarrhea. She had two fecal fat tests (random, not the 72 hour tests) which showed an abnormally high amount of fat.

I have the saliva HLA test from Prometheus on its way. Of course, just testing positive for the mutations doesn't prove she has celiac, but I thought that information would be helpful before her biopsy, especially for the rest of the family.

I was really hoping, as she was, that a gluten free trial would of itself be diagnostic. Now, we'll just wait for the biopsy and "hope" that it's positive. Not that anyone really hopes to have a disease, but I think folks here can relate to just wanting to have a definite answer.

No matter what the biopsy shows, we are considering a stricter gluten free diet after the biopsy is done. This time, we'll try staying away from any prepackaged foods and will keep a detailed food log.

[Steve Glutenberg]

I was diagnosed with Celiac Disease about 3 years ago. At the time of my diagnosis, I had been losing about 10 lbs. per month for about 2 months. After going gluten free, I didn't heal immediately. For the first few weeks, I continued losing weight at the same rate, then it slowed. All in all, I lost another 10 lbs. over about 6-8 weeks before it started holding steady. Then it took me about another 6 months to a year before I started gaining weight again. I just wanted to let you know my experience. One "glutening" can set you back a bit in the beginning. For the first year or two, her sensitivity to even tiny amounts of gluten could be very high, as the blood antibodies trying to fight gluten will still be pretty elevated. Tolerance is under 20 parts per million (PPM) - which is really tiny, when you think about it.

Her long developing illness has likely built up very big armies of antibodies to fight the daily influx of gluten - the body's immune response is responsible for most of the damage. When gluten enters, even in small amounts, the immune system is going to mount a big defense. It's a little like being vaccinated, but much more so. I have found that now that I've been gluten free for a few years, my antibody levels and therefore sensitivity have decreased quite a bit compared to that first year. I can tell when I've been "glutened" now, but it's much less dramatic than it used to be. If I get glutened two times in the same week, though (and I mean through accidental cross contamination - I have never eaten gluten on purpose) - then my response the second time is worse than the first. Presumably, I would become very sick again if I were glutened daily.

It's hard to stay gluten free in a gluten containing kitchen, but probably not impossible. Make sure she has her own toaster for preparing gluten-free bread (Udi's is great and I've never been glutened by it - and they make pizza crusts), and make sure she has her own shelf or drawer for condiments. Don't dip a knife that's been used to cut toast into a jar of PB or mayonaise, for example.

For the first couple of months, she might want to go dairy free as well. The intestinal damage caused by Celiac makes it very hard to digest any lactose from dairy ingredients (milk, cheese, etc.). Once her gut heals, in all likelihood she will be able to return to lactose from dairy without having bloating and diarhhea. Some Celiacs find that they are permanently intolerant to casein, a different protein in milk. If she has trouble returning to milk after her gut has healed, then she might consider casein intolerance as the culprit.

I'm married to another Celiac, and we have Celiac kids. Most of my kids were fine returning to dairy after 6-8 weeks, but one of them was not.

Good luck! It will be worth all the effort to give her the gift of better health. Tell her I'm a 38-year-old woman who had Celiac my whole life but didn't know it. Getting on the right diet now could spare her the health issues, miscarriages, etc., that I had as a young woman.

[Skylark]

I have the saliva HLA test from Prometheus on its way. Of course, just testing positive for the mutations doesn't prove she has celiac, but I thought that information would be helpful before her biopsy, especially for the rest of the family.

Just to straighten out a misconception, celiac genes are not "mutations". They're normal genes that are present in about 30%-40% of people with Northern European ancestry. The genetic tests do not "prove" anything either. They only give you an idea of risk. About 1 in 200 celiacs do not have the so-called "celiac" genes.

I do hope you get good information from her biopsy.

[enolah]

Just to straighten out a misconception, celiac genes are not "mutations". They're normal genes that are present in about 30%-40% of people with Northern European ancestry. The genetic tests do not "prove" anything either. They only give you an idea of risk. About 1 in 200 celiacs do not have the so-called "celiac" genes.

I do hope you get good information from her biopsy.

oops, I did not mean mutations, I just meant the HLA testing. I thought it might be helpful, because we have some other family members with autoimmune type illnesses and a few others who may also have celiac but be undiagnosed. Since my daughter has symptoms consistent with celiac, I figured that her symptoms plus a genetic profile that puts her at risk for celiac would be good enough reason to go gluten free no matter what the biopsy shows. I am hoping for more confirmation from the biopsy, however.