Why Am I Not Improving?

[Jojes]

I was diagnosed at Christmas after biopsy and improved slowly on a gluten-free diet throughout January, although energy levels did not improve. Main symptom was chronic diarrhea. Had gluten accident (!) early February, diarrhea for a 6 days, then genuine gluten accident at the end of February. Despite being gluten-free since, I still have daily diarrhea of varying severity. Not as bad as straight after accident (and on a 3 seperate but not consecutive days had a formed stool much to my delight - talk about simple pleasures!) but still very bad by 'normal' peoples' standards. In the last week have felt energy levels increase and managed 3 days without an afternoon nap. This makes me think that gluten-free part of diet is working in repairing villi but it's not improving bowel symptoms. Over the past 4 weeks have also tried to eliminate dairy, coffee, chocolate, alcohol, eggs with no obvious impact. Although when had wine and dairy-free chocolate at the weekend, defintely had awful diarrhea the next day so it's teetotal for me for a while. The thing is I was able to tolerate all these other foods in January and now it seems there is very little I can tolerate. Anyone know why this might be? Is gut just gone hyper-sensitive to any food? Here's a list of what I eat: can't detect a culprit when I eliminate any for a few days:

gluten-free Muesli, gluten-free Soya Milk or Rice Porridge, Florida Original OJ

Bananas, Mangos

Thai Kitchen Noodle Soup (gluten-free, Egg Free)

Heinz Baked Beans

Baked Potatoes, other cooked veggies

Green Salad with Newman's Own Dressing

GNC iron, Calc/Mag and Multivi supplements

gatorade

Chicken, fish, Steak

Canned Tomatoes used for ratatouille or other ved dish

Rice cakes, Peanut Butter or Soy Peanut Butter

Nuts and seeds, raisins

Peppermint Tea, Marks & Spencers Green Tea with Lemon

Homemade Cottage Pie (all gluten-free ingredients as far as I know)

As I said, could eat anything as long as gluten-free in January but now can't tolerate anything; anyone know a physiological reason for this? getting very fed up with limited diet and no apparent pay-off.

Help!

Jojes

[judy04]

Hi Jojes,

I am fairly new to this diet, nov 03, and I began having problems about a month into the diet. By the process of elimination I narrowed the culprit to dairy and

tomatoes.I noticed that you are consuming tomatoes and that might be your problem too. I've had to give up my favorite baked beans, spaghetti sauce,

cheese, yogurt, milk and ice cream. My husband has a great recipe for gluten-free

pizza but I'll have to wait on that. I hope in 6 months or so that I can start

to reintroduce things one by one. I hope to be able to eat oatmeal again, even with goat's milk, as it always seemed to calm down my stomach. I noticed after 4 months I am starting to improve a little, but I think the whole process will be long for me since I was sick for app 10 years, maybe more. I wish you all the luck in

the world. Take care....

[gf4life]

can't detect a culprit when I eliminate any for a few days

It may take up to a week or two for symptoms to go away and be obvious when a food is reintroduced. I am casein intolerant (so no dairy of any form for me) and when I have a dairy accident I suffer for quite a while (up to a week with bloating, gas and diarrhea). Judy is right about the tomatoes, they can be very irritating, also the OJ. I would skip acidic foods for a while if I were you. I also went through a period of time where I couldn't tolerate any fruits. veggies, or grains. And I can't stand all protein meals, so I ended up trying digestive enzymes (Pioneer brand worked best for me). I wish I had started them sooner! They help a lot to get my food digested properly and I feel like I am absorbing more nutrients.

Your diet sounds fine, other than the acidic and try a longer elimination period. Remember to eliminate ALL the suspect foods for at least a week and then only reintroduce one at a time, waiting at least 4 days between new foods. Otherwise you won't be able to tell which food might be bothering you. Dairy, nuts, soy, eggs, and corn are common intolerances. I don't know if there are any statistics to back up this statement, but it seems to me that a lot of gluten intolerant people are also intolerant/allergic to other foods. A lot more than the normal population. Or maybe we are just more aware of food intolerances/allergies than the rest of the planet!

God bless,

Mariann

[Jojes]

Thanks Judy & Mariann for your input. I've been keeping a food diary and I end up just staring at it on a bad day and can't see any pattern. Will try eliminate tomatoes from today as well as OJ - what do you guys take your iron supplements with if not OJ? As I mentioned in an earlier post, I live in the Philippines which means access to gluten-free foods or information on regular foods which are gluten-free in the states but made in the Philippines is poor. Also no luck with digestive enzymes yet. Must run and nibble on a rice cake before kids arrive for playgroup and spread yummy muffin crumbs all over my carpet!

Thanks again

Jojes

[lauradawn]

another point you might want to think about. It goes along with Marrian's post about the vegetables. I read in a book called " dangerous grains" that for many people during the healing process, your body is unable to handle the roufage, and high figer that typically is seen in a gluten-free diet. Like the veggies....Brocc, beans, seeds, nuts.....etc. So it may not be that you are allergic to these things, but they may be irritating your system enough that you are not healing as fast as you could be. i don't know really, just a thought.

Laura

[gbeauvais]

Hi!

I'm new to this forum, so please forgive me if I'm not doing it right, and I welcome any constructive criticism.

I was diagnosed with celiac disease in Feb, but I've been working on these diet issues for a long time. So the gluten was the missing link in my trial and error experiments. I'm feeling so much better since I got on the GFD, but I had already found most of the other problem foods through elimination trials for food allergies. A couple of things in Jojes post that stood out for me were: 1) ratatouille; I can't tolerate zucchini or other squash at all, and the onions would bother me too. 2) soy; I used to love Chinese food and could tolerate it well, but now any soy at all (soy, tofu, MSG, etc.) sends me to the bathroom with horrible bouts of violent cramps and diarrhea that last until all of it is entirely out of my system. I have to read labels very carefully for this as well as gluten ingredients. The Thai soup probably contains some MSG or soy, as well as the soy peanut butter.

Good luck and I'm so happy to have found this message board. I was feeling pretty isolated, so you guys are a Godsend!

Gerri

[warpspeed]

Hi! I'm new here too. Here's what's happening. I was diagosed with celiac disease by a blood test and went on gluten-free diet starting in Jan. NO EFFECT! I don't eat soy, dairy, alcohol, peanuts or basically anything but chick, fish, beef and veggies. Rice too. I have diarrhea everytime I eat and usually get up 3 or 4 times in the night. Not really cramping though. All food goes right through me like water. I went back to GI doc and he's doing biopsy next week. If that's negative, does that mean I don't have celiac disease? HELP!

[debmidge]

All I have to add is that I am married to celiac...but in my experience I have allergies to herbs and herbal tea gives me intestinal pain & diarrhea. I see that you have herbal tea on your list. Maybe you have a food allergy along with celiac disease?

[Jojes]

Well thank you all very much for your input. I'm on the blandest of blandest of diets now - no lettuce, no soy, no OJ, no tomatoes, no coffee, no choc. Just rice, chicken, rice, fish, rice, rice - Dr Atkins must be rolling in his grave! Before Christmas i'd hardly had as much as a full bowl of the stuff in years! Today I noticed that my tummy started to rumble after a few brown rice chips and a couple of brown rice cakes, so I'm really coming to the conclusion that fibre is a problem which ties in with what most of you are saying. Sorry to hear you're not doing well warpspeed, but haven't got any good advice for you. Will let y'all know if there's any improvement over the next few days; feeling more positive than in weeks so something must be working, even if it's not my gut!

Jojes

[warpspeed]

Somebody must know this! Don't you have to be eating regular food (not gluten-free) in order for a biopsy to be meaningful? My GI didn't say a thing about it! I just don't want to waste time or money.

Warpspeed

[YankeeDB]

Warpspeed, I suggest you call your doctor's office and talk to them about pre-test diet. My thinking is that if you still have such terrible symptoms and they arise from intestinal damage that such damage will be apparent when they endoscope you regardless of any short-term changes you might make now to try to influence the test. Just my very amateur $.02!

[Guest gillian502]

You must be eating gluten in order to have an accurate test, no two ways about it. If you've been gluten-free since January, that's too long to ensure an accurate reading. However, you're really sick right now, so you shouldn't wait too long to be examined. Check with your doc, and maybe consider asking if he can also do a colonoscopy that day along with the endoscopy, that may answer some important questions and will save you a second trip to the hospital later and less exposure to anesthesia.

[S-EBarr]

I have found that I have a BIG problem with fiber. You might want to cut that out of your diet as well.

[LindaB]

Hi all,

I have been gluten free for over a year and still have a problem with fiber. I do not eat any veggies except squash and cauliflower. I can eat fresh cantaloupe and canned fruit but no berries at all.

Until recently I could not eat beef except if it was ground and can only eat a pork chop, but no other pork. I find I have a hard time with fats and fiber. I have not had a real dessert since on this diet--even the gluten-free cookies make me gassy. I eat not dairy or anything with casein in it, but can tolerate low acid no pulp orange juice. I drink gluten-free rice milk occasionally, but get most of my calcium with supplements.

I am older so I feel it is taking me much longer to heal than most. I have recently gained 5 pounds and am getting stronger, but recently tried yogurt--just a spoonful and am still suffering from that.

This diet has given me new problems which I never had before, however, the pain has stopped and now just have discomfort occcasionally, especially if I have to sit for very long. I feel it takes quite awhile for you body to get used to these new foods. As the months progressed I have found more and more things I cannot eat without discomfort.

Linda

[Jojes]

I must admit that I feel very disheartened at the thought of such a restricted diet for the rest of my life. Gluten-free I can handle (I think!) but the rest of the intolerances don't leave anything tasty to eat; living on rice cakes, chicken, bananas, nothing to get excited about, but still not better. Does anyone know of a scientific reason why withdrawing from gluten just isn't enough for some people - is it damage to the gut that doesn't repair? Having responded very well to a gluten-free diet initially I can't believe that I'm not doing well since my gluten accident almost 6 weeks ago. Why would I respond so well intially but then end up paying longterm for one teeny weeny mistake?! As I live in Manila I have no access to medical professionals with Coeliac knowledge and the only other Coeliac I know had his diarrhea disappear over night after going gluten-free (he's 10 years older than me too!). To top it all off, I think I'm putting on weight but still have diarrhea several times a day.

Anyone have any answers out there?

Jojes

[debmidge]

To Jojes

Your degree of celiac sounds like my husband's. No fruits & vegetables in addition to the gluten free diet. He must have much damage since he's been sick for 28 years undiagnosed. He has had no biopsy yet, but I don't think it's needed but certainly good to have. We can tell by his slight improvement on a gluten free diet that he is celiac, plus he scored a stong positive on the blood test. I think for him it'll just take some time.

In your country, where do most of your gastros go to school? Manilla? If yes, perhaps you can write a letter to that school's gastoenterology dept. and ask for a referrral to a gastro who has training with celiac disease. Perhaps you can attach to your letter a celiac disease pamphlet from the CSA.

Debmidge

[Jojes]

Debmidge

Thank you for your suggestion about doctors here but I am Irish and plan to see a Coeliac specialist in Ireland in June. I was diagnosed based on a biopsy as the relevent blood tests are not available here. According to the biopsy there was damage to my villi but not apprently extensive - perhaps the sampling area wasn't representative of the extent of my disease. I am 33 years old and have IBS (supposedly) for at least 7 years. celiac disease only started to really interfere with my life last October and it has dominated it since unfortunately. Perhaps 2 babies in 19 months was more than my system could handle.

Your husband is very fortunate that you are taking such an interest in his condition. I really hope that time does offer some respite.

Take Care

Jojes

[gf4life]

Jojes,

You may have to restrict your diet more severely now, but you shouldn't have to do it forever. For many people the other intolerances are caused by the damage from the gluten (or the body being confused and mistaking other foods for gluten). These are supposedly the ones that eventually you might outgrow. Gluten is the only one that is 100% for life. So please don't be too discouraged.

I don't know if you can get digestive enzymes in the islands, but if you could you might want to try some. They really helped me out when I was having trouble digesting just about everything! I am now able to tolerate most foods (except gluten and dairy) and only have occasional indigestion.

God bless,

Mariann