Going Gluten-free Made Things Worse?

[thumperhm]

Okay, so I need some knowledgeable advice from all you out there that have been in this boat much longer than I have.

To make an insanely long story short, I finally took the advice from my life-long nutritionist that I should try a gluten-free diet for all kinds of things going wrong with my health. As a background I have been a diagnosed lactose-intolerant for nearly 20 years but whether I react to the lactose was always a crap-shoot, sometimes yes sometimes no.

I must note that before I went on the diet I didn't have any real digestive issues with gluten, just tired a lot and other 'mysterious' ailments. Anywho, so I started a hard-core gluten-free diet (obviously lactose-free as well) about a week and a half ago and immediately became extremely sensitive to any dairy product, such as butter, whey or even lactic acid in foods, which has never ever happened before. I also became extremely tired if I had anything with gluten in it that I didn't realize. Okay, weird, but I can deal with that.

However, what I'm not dealing well with is now I constantly feel like I'm having a reaction to milk. Grumbling, gassy stomach, diarrhea, abdominal pain, etc. And a year ago one of the innumerable doctors I've seen said I had a 'bit of colitis' that he couldn't explain that just randomly appeared. I took his medicine for a few weeks and that was that. I refused to stay on it 'indefinately' like he told me to and I've been fine. However, that seems to have flared up again since I went on the gluten-free and now casein-free diet. And, my eyesight has gotten more blurry, which is weird.

So does any of this sound normal? I know some people say their symptoms get worse or they have withdrawal but I didn't have many of the typical symptoms to begin with. I haven't really changed my diet except taking out gluten. I still eat a lot of the same things but have been trying a few gluten and now casein-free substitutes here and there. I guess I'm just scared I'm on the wrong track again. I've been sick of being sick for two years now with doctors who don't know, surgeries, new health problems, weight gain, etc. So thanks for any insight!

[fedora]

it has only been a week and a half. It has not been long enough to be retesting with both.

My suggestion is no gluten or dairy. Then after a couple of weeks try one at a time. You need several days between each to know for sure.

My first week off gluten was weird. I can't have casein, but it did not become obvious till after I went off gluten. I severly cut back on dairy too. Then when I did eat it, it was obvious. horribly obvious. My enterolab stool test showed antibodies to casein, but the proof was my reaction.

If you totally remove gluten and dairy and continue to get worse, it could be something else. A friend of mine removed gluten and just got much worse. Turned out she is corn intolerant and fine with gluten.

[thumperhm]

Hey Fedora,

I must have mis-spoke. I have NOT been eating any gluten or dairy at all but have the aches and pains like I always did when I had lactose but all the time and my colitis has flared up for only the 2nd time in my life.

Like you, my intolerance to casein did not show up until I got off the gluten and it's only from my own observation (so whether or not that is permanent, who knows). But I don't know why I'm having the same gassy, grumbly, painful, etc. stomach issues since I'm not eating those things.

I guess I could be in the same boat as your friend, something else is causing this, but I just wondered if there is a "getting worse before it gets better" period with gluten that could explain this.

I don't really have a doctor to help me through this as the doctors I've been to all test me for celiac and say it's negative, but don't believe in all the false negatives out there or have any idea how to help me. I've just got my nutritionist to help me through this gluten-free test so everyone's experiences are invaluable to me.

Thanks for the input!

[ravenwoodglass]

It can take a bit of time to heal, and it also takes time to learn what is really gluten-free and what isn't. To heal quickest it is best to consume mostly whole unprocessed foods. During this time you can research a bit to know what is really safe for you to eat.

Have you checked all supplements and meds? How about your shampoos and lotions etc. Did you get a new toaster, are you sharing a house with gluten eaters? The weather is getting nice in lots of places are you grilling with the same gluten contaminated grill? All these and more can CC (cross contaminate). There is a lot to learn about gluten free living, and it does take time. I would wait to deliberately challenge either gluten or dairy until you have been mostly symptom free for a couple of weeks.

[fedora]

hi,

Please give it some time. I didn't have loud belly gurgling till after I went off gluten. It was loud too and often. But now it has stopped. It takes some time for your belly to readjust and heal. It takes time to weed out all gluten sometimes. I found barley in the craziest of places-pickled ginger, flavored vinegar. I thought I was 100% but got some gluten rarely. Cross contamination can occur easily. Good luck

[Nancym]

I'd encourage you to give it more time. Our bodies react strangely when we take away things that they're addicted to or even things that are harmful. But if it doesn't go away consider that you might have other foods issues too. For instance, I've finally figured out that nuts and seeds give me intestinal issues. And it seems like taking away other things my body didn't like made it even more sensitive. I suppose because it can mount a stronger immune reaction when it doesn't have challenges all the time.

When I have reactions I always back off onto a diet I know I'm ok with (meat and veggies) and wait for things to settle down. Then I carefully and slowly add things back that I'm suspicious of. I eat the suspicious thing for a couple days in a row and wait for about 3 days to see how my intestines reaction.

[gfpaperdoll]

Also, when you took gluten and dairy out of your diet, did you ADD anything to your diet? Like any new gluten-free foods? You really should not add anything new until you are healed. & if you are reacting that badly to dairy you probably cannot handle soy.

to sum up, omit all soy & any new foods that you have added to your diet & see how you feel.

[AliB]

After having the blood test I immediately stopped gluten and dairy. Within a few days, as I was still reacting to some foods, I realised that my problem wasn't just gluten, but carbs in general so I cut right back on carbs and sugar and have kept my diet simple, sticking mainly to good, plain unprocessed meat, fish, poultry, fruit and vegetables (the Specific Carbohydrate Diet).

I went through withdrawal, for 2 weeks or so, which is quite common and had some other weird symptoms, but I kept up with a good supplement of all the nutrients and eventually it settled down. I have had odd reactions to different foods all the way through which I put down to either problems with those foods or because my gut had not healed.

However, just last weekend, 3 months after I started, I suddenly got a 'proper' gluten reaction. I suspect either oats or a contamination of them at source is what triggered it. I had been having oats all the way through - either in homemade cookies, or shop bought ones, and have realised that I have been getting glutened all the way through from food I thought was safe, but isn't.

Go back and check the food you eat - gluten has a nasty habit of creeping in in other forms such as dextrose, for instance. If you are not sure about an ingredient, just ask the forum. You might think you are gluten-free but the gluten has other ideas!!! At the end of the day, if you don't eliminate it completely, it's not worth doing it, as even the smallest amount will keep the damage going and the immune system working overtime, apart from being a complete waste of time and money.

I suspect that my immune system is finally starting to kick in and work properly. The gluten had depressed it for so long that it did not have the strength to fight against it. Yesterday I tried some cream (virtually my only dairy in the 3 months) to see if my lactose intolerance had healed and judging by the obnoxious gas and the bloating and discomfort, it obviously hasn't.

Rightly or wrongly I concluded that if my immune system is now working more effectively, it should be producing more antibodies, so Wednesday I shot down to the docs to get more blood taken for a retest and more tests that weren't done on the initial one (which, of course, came back negative!). I will be very interested to see what difference I get this time, if any.

When you remove gluten, your immune system is finally able to start working more effectively so reactions will be stronger. Certainly you will react more to dairy which just goes to show how intolerant you really are! Sometimes these things do get worse before they get better and it could be that you are reacting to other foods that you didn't notice before because the gluten and lactose reactions were clouding the issue.

What about trying an Elimination Diet like the SCD for a while? I thought, "in for a penny in for a pound" If I am going to do this then I need to do it properly. Often, those who go gluten-free end up replacing the gluten with lots of other high-carb, high-sugar foods and can't figure out why they aren't getting better. In some ways they end up replacing one set of problems with another. That's why it is best to keep it simple until your body has healed and you can then tolerate other foods. The SCD is good for things like Colitis. By dropping gluten, the body gets thrown out of its 'comfort' zone and it can take a while to readjust.

[thumperhm]

Thanks everyone for your suggestions!

My abdominal pain got so bad last night I knew something was horribly wrong, so I headed off to the nutritionist today and found that my stomach is not producing nearly enough Hydrochloric Acid, thus I wasn't digesting anything! I got some supplements to help with that problem and things should get a lot better. *fingers crossed*

She thought I may even be able to re-introduce some non-lactose dairy like butter after a while on the diet and the HCL supplements...so we'll see how things go.

Thank you for all the input. I definitely appreciate it and will take some of your suggestions to see what else I may be intolerant to after I get this HCL thing under control and can digest what I'm eating. Yeah!!

Oh, but you mentioned dextrose can have gluten in it. I didn't know that! Is it all dextrose or is it often contaminated like oats??

Thanks for being a wonderful forum to turn to when you feel all alone. Hopefully I'll feel better in a few days.

[AliB]

Ridgewalker (Sarah) posted this on another thread a couple days ago - it is worth pasting and saving into a document to save on your computer as the information is extremely useful.

List of ingredients to watch out for in toiletries and cosmetics:

Avena Sativa (Oat) Kernel Flour

Colloidal Oatmeal

Cyclodextrin

Dextrin

Dextrin Palmitate

Hydrolyzed Malt Extract

Hydrolyzed Oat Flour

Hydrolyzed Vegetable Protein

Hydrolyzed Wheat Flour

Hydrolyzed Wheat Gluten

Hydrolyzed Wheat Protein

Hydrolyzed Wheat Protein/PVP Crosspolymer

Hydrolyzed Wheat Starch

Malt Extract

Maltodextrin

Oat Extract

Secale Cereale (Rye) Seed Flour

Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate

Triticum Vulgare (Wheat) Germ Extract

Triticum Vulgare (Wheat) Germ Oil

Triticum Vulgare (Wheat) Gluten

Triticum Vulgare (Wheat) Starch

Wheat Amino Acids

Wheat Germ Glycerides

Wheat Germamidopropalkonium Chloride

Wheat Protein

Wheatgermamidopropyl Ethyldimonium Ethosulfate

Yeast Extract

Although this applies to cosmetics some of the ingredients are also used in food so the list might help - things like Maltodextrin, Hydrolyzed starch, Hydrolyzed Vegetable Protein, glycerin, etc. Unless the ingredient indicates that it is extracted from something other than wheat, such as corn starch or corn syrup, you have to assume that it is wheat. I was looking at some Pate in my local store. Everything seemed fine apart from the fact that it contains 'starch', well it could be corn starch, it could be potato starch, it could even pea starch, but it could also be wheat starch.

It is a veritable minefield - but as the old adage says, "if in doubt, leave it out". Unless you are keen enough on a product to ring the manufacturer, forget it.

You were saying that you haven't changed your diet much. Well, you could quite easily, like I did, have been fooled into thinking that some things you are eating are safe. If you are not sure about any food you eat, then check the ingredients either on the forum, or there are safe/unsafe food lists under the Celiac Info tab at the top of the page. Click on it and you will see, on the left-hand side loads of topics from where you can gain information. The food lists are at the bottom of the topics.

[Nancym]

Although there seems to be some controversy over it, the latest reports I've read said oats are not safe for celiacs. Even ones that are certified to be gluten free have a protein in them that many celiacs respond to. It's something I think you're best removing from your diet. Add it in later after you've gotten accustomed to things.