Celiac For 6 Mo. & gluten-free But Still Sick-can Anyone Help?

[1dayatatime]

Hi everone, I have been reading this board for a while, but just joined. I was dx in June '08 at age 60 with Celiac by my Internist's P.A. She listened to my symptoms--severe persistent diar. and 10 lbs. weight loss so she immediately ordered bloodwork. It came back at a 64 for Celiac so then I went to DH's. G.I. doc (DH has Crohn's). He did endoscopy and biopsy and I tested postive for Celiac. I then went online and began reading endless and valuable information about Celiac, bought 4 books, and joined a Celiac Sprue Assoc. support group. I also had an hour long session with the clinic's dietician/nutritionist who printed out some info from the Internet for me. (I had my bag of books and info with me which amazed her). Then I contacted the vice-president of the local CSA group and she was extremely helpful.

By the way, I had the same symptoms a year ago but the lab results stated "not enough blood" (I think) for the Celiac test. Well, the Dia. went away for nearly a year so I just didn't think much of it then.

Anyway, I have been eating no gluten and avoiding all crumbs that my husband leaves on the kitchen counter, keeping a food journal, changed all my make-up, soaps, etc. The ONLY thing I ever have to touch with gluten is the dog's biscuits and my husband won't change those (this is necessary due to his business travel). So I use tongs to put them in her bowl. I wash my hands with gluten-free hand soap all day long, especially after petting the dog. I designated a separate area of the kitchen as "gluten-free" and bought new pots, utensils, etc. I instructed DH not to use the same dish towel as me, and he doesn't. There is no cross-contamination happening.

I bought a book called "Gluten-free Shopping Guide" and keep it in my car at all times for shopping. I only buy the brands listed. The CSA group mails a newsletter with updated foods and restaurants every month.

The problem is, I still keep having severe Dia. since April. At first, my G.I. doc prescribed Lomotil and Bentyl for dia. and cramping/bloating to take 4 times a day, which I did until I found out that I would get extremely bloated and then have what he terms a "blowout" (sorry, what a professional term, huh?) So then I only took the Lomotil immediately after an episode in order to stop it. This has been going on since June. Then he prescribed Alinia for parasites (Giardia) even though I tested negative for it, so I didn't take them. Then he prescribed Xifaxin which is for E. Coli....isn't that extremely dangerous? Note here: I also have Chronic Neutropenia (low white blood count) and I am a breast cancer survivor of 10 years. Praise God! I am taking the Xifaxin (2 pills once a day) and still have 7 days to go. I have been taking a probiotic, "ASL #3", one a day, for two months but they are so expensive I can't keep taking them so I eat 1 c. of yogurt a day (Stoneyfield Farm vanilla low fat). I have not had any other tests done.

I heard that Celiac's may be lactose intolerant so I have been drinking lactose free milk and taking lactose enzymes when having other dairy products like ice cream, cheese, puddings.

I just missed my 4 yr. old grandson's birthday party because I could not stay out of the bathroom long enough to get ready and drive over to it. Should I see a different Dr. for possible food allergies? Or does one just stop eating all foods except rice and eggs or whatever and then add one new food at a time?

You all are terrific and so full of great advice, just like the board on Komen.org for B.C. survivors!

Thank you.

[ShayFL]

Hi There...Welcome!!

Sadly it isnt just the lactose that can keep you with "D". Casein is a milk protein that MANY celiacs cannot tolerate. If I were you, my next move would be completely dairy free as well and give it a month or 2 to see if that improves things.

Most of us have been where you are. Hang in there.

[happygirl]

Welcome to the board!

Has your doctor re-run your Celiac panel (bloodwork) or re-done your endoscopy to check the healing? If not, that may be an important first step.

[Jestgar]

Welcome to the board!

Has your doctor re-run your Celiac panel (bloodwork) or re-done your endoscopy to check the healing? If not, that may be an important first step.

Very good idea.

I was going to suggest limiting your diet to low fat meat (like chicken or fish) and well cooked veggies for a couple weeks just to give your digestive system a rest. Gentle fruits like bananas and white rice would be good too.

Treat yourself as if you've had a bad stomach flu and eat only the most gentle of foods.

[mftnchn]

Welcome to the forum. Sounds like you have worked very hard to adjust to the gluten-free lifestyle and are very careful. Here's a few ideas I have thought of:

Take the foods you are eating (brands from your list) and do a search here on the forum. Some of the more sensitive celiacs may have posted about discovering those foods have CC issues. You can also call the companies and inquire about those foods as sometimes the recipes are changed or the location/environment has a change.

Consider eliminating dairy as a trial, and then the next one I would check is soy. Soy has also been shown in the research to cause villi atrophy in some people.

The next thing I would consider is a trial on the SCD. The science of this diet is partially based on the understanding that villi damage causes us to not be able to make several of the carbohydrate digesting enzymes. Lactase is just one of these. So the SCD eliminates carbs that can't be broken down, and also has a step by step process for starting with easily digested foods and then adding gradually. This diet is very good for helping people with chronic diarrhea. The diet can also be an elimination diet if you are thoughtful in how you add things in and keep a good record. The diet will eliminate grains, legumes (almost all initially then allows you to eventually add them), and potatos (one of the nightshades). By testing the rest of the nightshades (tomatos, peppers, eggplant) before you add them in, you will have eliminated or tested almost all the major allergens. (Eggs are allowed on SCD, but you might test these too.)

After that, if you are not better, you might consider further elimination diet to check meats, nuts, fruits, oils, etc.

Parasites definitely could be a possibility because they are very hard to test for. I haven't tested positive either, but have passed a lot of visible ones over the past 9 months, and a whole bunch more when I went on SCD. So I am sure that many invisible ones are there too. Celiacs are very prone to these problems because of the carb digestion problems (offering them a feast in the intestine), compromised immune system, and destruction to the lining of the gut. So I would not rule this out at all.

I'm sure you'll have other good suggestions come up here.

[veggienft]

Mftnchn is on track. The most likely suspect is dietary fructose malabsorption.

Open Original Shared Link

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Fructose malabsorption or Dietary Fructose Intolerance is a digestive disorder[1] of the small intestine in which the fructose carrier in enterocytes is deficient. As a result of this problem, the concentration of fructose in the entire intestine is increased. Fructose malabsorption is found in approximately 30-40% of the population of Central Europe, with about half of the affected individuals exhibiting symptoms

.......increasing osmotic load, providing substrate for rapid bacterial fermentation, changing gastrointestinal motility, promoting mucosal biofilm and altering the profile of bacteria. These effects are additive with other short-chain poorly absorbed carbohydrates such as sorbitol. The clinical significance of these events depends upon the response of the bowel to such changes; they have a higher chance of inducing symptoms in patients with functional gut disorders than asymptomatic subjects.......

.....A small proportion of patients with both fructose malabsorption and lactose intolerance also suffer from celiac disease........

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Notice the table showing the fructose content of food lower in the link. It shows that table sugar is half fructose.

This link.......

Open Original Shared Link

.....shows the problem to be a failure to release the enzyme fructose 1-phosphate aldolase in the intestin as required in the presence of ingested fructose. The mechanism for detecting fructose lies in the villi, the intestinal lining structure damaged by celiac disease. For those of us who's celiac disease has damaged or destroyed our ability to digest fructose, the fructose sits in our intestines. It grows bacteria and fungi.

We can't eat sugar or fruit. Dietary fructose malabsorption is the reason. PLAIN yogurt handles the trace amounts of sugar in non-sweets.

I've been sugar-free for decades, and gluten-free about 10 months. I'm still not able to start back on sweets. I'm watching and waiting. However, if I never get to eat another sweet, the health improvements from being gluten-free and sugar-free make life comparatively joyful.

Try it.

..

[Jestgar]

The most likely suspect is dietary fructose malabsorption.

Please be wary of people diagnosing you over the internet.

[ShayFL]

I agree.

[missy'smom]

Forgive me for posing this question but have you verified that all your meds are gluten-free?

[colorado]

I'm not sure what tests your docs have run since your diagnosis, but they should be checking for bacteria in the small bowel. Also, when you don't have the big D does the stool float or sink. I hate talking about that stuff, but it is a fact of life I guess.

Anyway, you can spend a week collecting samples for your docs at their requests, get a small bowel series which is kind of an old fashioned test. They make you drink barium and take x-rays to make sure things are moving through your system okay.

For what it's worth, I have been gluten free for just about a year now and the improvements are nil from the diet. I am going through a ton of various tests with a new GI doc now, but my situation is quite different than many here. Still, the troubleshooting can be the same.

Others mentioned going on a bland diet, which is not a bad idea in trying to remove potential hazards from your diet. Make sure you get enough vitamins and minerals, your doc/nutritionist may want you to take supplements because of your age and the fact that it can be more challenging for celiacs to get all the vitamins and minerals they need.

Like everything else, they need to be gluten-free.