What Can Be Going Wrong....

[bluesky8130]

So its been a month since our house went gluten-free and we have kept it that way (about 99.5% - still non gluten-free cereal for my son) but still my hubby is feeling like crap. He seems to be getting worse . He is getting bad pains in his stomach and his lower back...as bad as it was about 3 months ago. He is getting to the point wondering if it is even worth doing the gluten-free diet if he is feeling this bad. We did discover that his toothpast is not gluten-free so we changed that & his toothbrushes about a week ago.

I have been very careful about ingrediants and whenever I am not sure, I contact the company to find out from them (I hate lables that say natural flavours or spices). After doing some reading, he has decided to try getting away from dairy for a while to see if that helps...it has been 2 days but no improvement. I know that it hasn't been that long and I am trying to keep his spirits up but it is not working very well.

How long did it take all of you to start feeling better? He is getting worried that he has the refractory form of the disease.

Any advice would help & would be appreciated....thanks

bluesky in Winnipeg

[newo ikkin]

When I started my gluten free diet I felt crappy for a couple of weeks. I think it was because I was eating alot rice to replace the wheat.. Sooo I started to eat wayyy more fruits and veggies and I was feeling pretty good. Also maybe if you do ever eat dairy you should try taking a lactase pill. I think celiacs and lactose intolerance go hand in hand.

[hez]

I have been gluten-free since April and am just now feeling better. It takes a long time to really have a gluten-free house. Just a month ago I got rid of shampoo and make up because I was not sure I was gluten-free. It takes time. Also it takes longer than a week for me to feel better after getting glutened. He may still be recovering from the gluten in the toothpaste.

As someone else wrote it took a long time to do all the damage. It will take awhile to undo the damage and heal. Tell hubby to be patient and keep on the gluten-free diet.

[Wandering Hermit]

I too have been gluten-free since April and I don't feel much better. The only change is that the D is generally gone, but I still have loose stools 9/10 days. The painful stabbing cramps are gone too, but I am still achy and lethargic and have a headache and neck pain everyday, all day.

Look into the lactose. I am have found that getting a sizeable amount (glass of milk, bowl of ice cream) will make me gassy and sick for a couple of days.

[tarnalberry]

When you say "staying away from dairy", have you gotten just as savy finding casein in labels as finding gluten? That stuff is a bugger to find on labels sometimes! But I agree that it needs more time, and he should look into other food issues as well. He's taken a lot out of his diet, and he may need to look at what he's increased to take it's place and determine if that's causing a problem for him. Soy is a potential problem as well!

[Guest nini]

unfortunately it can take a while to start feeling better... and also there may be other foods that are irritating his already damaged intestines... initially he might want to stay away from corn, dairy, rice, and soy as well as gluten... after he heals he may be able to add corn, dairy, rice and soy back into his diet. I would stick with a diet of fresh fruits and vegetables, stay away from the really acidic ones til he heals. Stick with bananas, melons, pears, peaches and grapes... oranges and grapefruits and strawberries may be too harsh on his system right now. For protein stick with plain meats like chicken and pork and hamburger. For vegetables, stay away from the really fibrous gassy producing ones initially like celery, broccoli, onions, peppers and salads... Stick with things like avocados, green beans, squash... he may have issues with potatoes initially as well so be careful with those too. Keep a food diary, follow a strict elimination diet at first and then slowly add things back in one at a time every few days and keep track of any changes.

Good luck. I know it's not easy and frustrating, but it does get better and it does get easier.

[Carriefaith]

Most people take a few months to feel better on the diet while the intestines heal. If there was a lot of damage done, the intestines will take a while to heal. I've read on this board that some people feel better in a few days, but others, like myself, take about a year to get better. Here are some tips to get 100% results on both the dairy free and gluten free diet.

For dairy check, chocolate items, candy, baked goods (some gluten-free products have dairy), soups, medication (I still take medication with lactose since I believe my problem is with casein the milk protein), and of course the obvious dairy products

For gluten check all food prodcts plus suncreen, shampoo, conditioner, chap stick, lotion, shaving cream, ect. Also make sure he has a separate/new toaster, condiment jars, fryers, oven mits, and also make sure that any scratching pots/pans are replaced.

[GFKryptonian]

The minute I was diagnosed and went gluten-free, (about 5 years ago) my doctor told me that it was imperative that I maintained some decent exercise about 2-3 days a week. OF course I didin't, and I was still lethargic and I had alot of the symptoms you described. I started to go to the gym and workout regularly, and within a few weeks i felt much better. You should tell your husband to try some regular exercise. A good way to start can be 20-30 minute of cardio (swimming,running, even walking) about 3 times a week.

Even something as simple as walking around the block for a half hour after dinner will help. Good Luck I hope he feels better!

[Merika]

bluesky,

It is unlikely your dh has the refractory sprue. From your post, he's only been gluten-free a *week* because of the toothpaste. Even little amounts count. He has most likely been sick for a long time. Often doctors make it sound like you just go gluten-free and then everything is better. The damage took years to occur, and most likely will take over a year, if not longer, to heal.

I do not want this to be discouraging - rather the opposite - a year of healing is not long compared to the time most likely spent sick. Like all healing, there will be ups and downs, time when he feels better and times when he feels worse. Overall, though, he will see improvement.

Other food intolerances are often caused by celiac, and sometimes (many times?) they go away after the body has had time to heal. Personally, I would recommend focussing very hard on being gluten-free right now. In a month or so, maybe start thinking about other foods to find a good healing diet for him. There is lots of info on this site. I recommend waiting a bit, because just transitioning to gluten-free is overwhelming at first, and that's all that's really *medically* required. In order to feel better sooner, he will probably want to investigate his diet further, but go easy and take one step at a time.

Hth,

Merika

[Jnkmnky]

Maybe you could plan a handful of gluten free meals and stick with those only for the next month. Varied, but simple meals. Ensure the gluten free status of those meals/snacks and do a kind of healing/cleansing menue for a month to see if improvements occur. Now you know about the toothpaste, so you're really JUST starting the diet. People really don't need that much variety in their diets anyway. Sure it's great to eat something different everyday, but most people in the world do not have a shopping super center down the street that supplies them with food choices from around the globe so that they're eating a different food at every meal 365 days a year. A month of simple, gluten-free, repetitive meals will help cleanse his system, identify any additional food issues quickly, and heal his intestines and HOPEFULLY end the pain he's in.

[bluesky8130]

thank you all so much....I really appreciate all the help

[YankeeDB]

Consider other food sensitivities. I didn't feel good until I used the Yorks Labs testing and eliminated soy, yeast, dairy, eggs, and a few other items. Good luck!

[Guest katzmeow21]

So its been a month since our house went gluten-free and we have kept it that way (about 99.5% - still non gluten-free cereal for my son) but still my hubby is feeling like crap. He seems to be getting worse  . He is getting bad pains in his stomach and his lower back...as bad as it was about 3 months ago. He is getting to the point wondering if it is even worth doing the gluten-free diet if he is feeling this bad. We did discover that his toothpast is not gluten-free so we changed that & his toothbrushes about a week ago.

I have been very careful about ingrediants and whenever I am not sure, I contact the company to find out from them (I hate lables that say natural flavours or spices). After doing some reading, he has decided to try getting away from dairy for a while to see if that helps...it has been 2 days but no improvement. I know that it hasn't been that long and I am trying to keep his spirits up but it is not working very well.

How long did it take all of you to start feeling better? He is getting worried that he has the refractory form of the disease.

Any advice would help & would be appreciated....thanks

Go find yourself a great naturopath/Doctor who knows something about celiac disease and then get tested for other food allergies.  Do this with blood testing through Great Smokies Diagnostics or someone similar.  You could maybe even call them and have them give you the name of someone who uses them.  There are too many variables with this disease and finding out quickly rather than blindly trying to eliminate things you are not sure of.  Eat simple foods only.  Fruits/veggies/ rice, steamed apple/cinnamon over steamed rice tastes great. very small portions of turkey, chicken, (no beef),(no corn), (no dairy), (no casein)  chew your food very well. 

Also get checked for leaky gut syndrome.  You can get a test called an "intestinal permeability test" .  If you have this syndrome you really want to know.  Too many people with autoimmune disorders also suffer from this.  If your doctor laughs at you when you ask him this find another doctor.  I do NOT work for the above mentioned company.  Look up leaky gut online and read up on it.  It makes so much sense.  I was diagnosed at the age of 50 with celiac disease after feeling terrible for years.  It was finally a holistic practiitoner that did extensive stool testing (CDSA). blood work for food allergies, then "intestinal permeability" and then tested for celiac. 

anyway, good luck

mj

 

bluesky in Winnipeg

<{POST_SNAPBACK}>

[chronic]

After 2 plus years of being gluten free I too continued to be sick. Granted many symptoms improved but the fact remained many more were just as bad, infact, worse. Thank God for this message board as it enabled me to ask questions , also learned additional information while reading messages from other sufferers. The latest help for me was getting the Sage Test. At the time it was in one of the messages, I had no idea what it was. This new way of testing for allergies has improved my life once all these foods were eliminated from my diet.

Chronic

[jenvan]

if heare trying to be dairy/casein free, you need to watch out for all of these ingredients on labels:

Milk-based Ingredients:

Artificial Butter Flavor

Butter, Butter Fat, Butter Oil

Buttermilk

Casein

Caseinates (ammonium, calcium, magnesium, potassium, sodium)

Cheese

Cream

Cottage Cheese

Curds

Custard

Ghee

Half & Half

Hydrolysates (casein, milk protein, protein, whey, whey protein)

Lactalbumin

Lactalbumin Phosphate

Lactoglobulin

Lactose

Lactulose

Milk (derivative, powder, protein, solids, malted, condensed, evaporated, dry, whole, low-fat, milkfat, non-fat, skimmed, and goat's milk)

Nougat

Pudding

Rennet Casein

Sour Cream, Sour Cream Solids

Sour Milk Solids

Whey (in all forms including sweet, delactosed, protein concentrate)

Yogurt

[bluesky8130]

Just a quick update...

Hubby has been drinking Lactaid milk for the last week and is feeling much, much better. He has also been eating a very limited diet as mentioned but is a little afraid of introducing anything back in yet. He wants to give it a few more weeks.

Thank you all so much for your help & suggestions

bluesky

[Guest tummers]

hey peeps

im new here...

ive been diagnosed with IBS (irritable bowel syndrome) for about 5 years, my dr is absolutely rubbish and just keeps giving me tablets for the tummy pains.

my aunty has been diagnosed with celiacs and we have the same symptoms, so ive tried cutting out gluten and wheat for the past week or so and its been great! a little ache here or there (and a kinda constant headache-but way better than the tummy pains!!)

ive been eating gluten-free bread (toasted as its not very nice straight from the pack ) salad, veg and gluten-free soup. but what else is there to eat?!?!?!

how severe are peoples symptoms? i usually get stomach pains within 10mins of eating anything non-gluten-free.

thankies to people in advance

x