Could It Be More Than Gluten?

[horsegirl]

I've been gluten free (again) for 11 days now, after a grueling 6-week gluten challenge for blood tests & a biopsy. All blood tests & the biopsy were normal, but the Enterolab results showed positive for gluten as well as casein, & I'm double HLA-DQ1 genes.

After a couple of days being gluten free again, my joint & muscle pain was going away quickly, & my brain fog & depression were lifting too.

The past few days I've had quite a few foods containing corn or soy, to replace snacks with gluten.

(I'm still eating milk products too, as I can't get going on the casein free diet on top of gluten free yet).

My question is, could I have other food intolerances too? How did people discover if they were intolerant to soy, corn, yeast, etc? What symptoms did you have? My G.I. problems are all gone

(thankfully), but the muscle & joint pain feels worse again today, so I'm not sure if that could be

from residual gluten from the past 6 weeks, or from another food intolerance.

Any help would be great! Thanks!

[horsegirl]

Anybody able to help with this??

[Guest j_mommy]

You could do an emlination type diet...eat foods you know don't bother you and then try adding you questionable thing at a time...taking time for each one.

Personally I'm seeing an allergist in two weeks to see if I have allergies to some other things!!

Good Luck!

[Guest kivmom3]

I've been gluten free for almost 9 weeks now and I have been keeping a food diary of all the foods I eat during the day and how I feel afterwards. That is how I discovered that I had a soy intolerance. My symptoms were not GI related with the soy but muscle/joint pain and severe headaches/depression. Once I eliminated the soy I started to feel better.

I would eat the same foods for a few days and introduce 1 new food for a snack or lunch. If it gave me a reaction, I can mark it off my list. I've found that I may also be rice intolerant as well .

I'm still learning but that is the best way for me to make sure I can keep track of the foods I eat and if I get sick. I'm going to a celiac specialist here next week so maybe he can test me for some food allergies so I don't have to do "trial and sick" tests on myself.

Hope this helps . I know stopping the milk can be hard but that could also be the culprit, no downer or anything.

Try the diary, it seems tedious but it did help me out a bit:). You could also ask your doctor to do a food allergy test on you as well. I posted on this forum the name of the food allergy test and people have responded with ELISA (?). I'd ask your doctor about it, maybe an allergist or celiac specialist.

Gg

[EBsMom]

My question is, could I have other food intolerances too? How did people discover if they were intolerant to soy, corn, yeast, etc? What symptoms did you have? My G.I. problems are all gone

(thankfully), but the muscle & joint pain feels worse again today, so I'm not sure if that could be

from residual gluten from the past 6 weeks, or from another food intolerance.

You could definitely have other food intolerances. It seems that most of us do, at least in the beginning. My dd was the first of our family to go gluten-free - she had the most severe symptoms - and she's now the one with the most intolerances. About a week into her gluten-free diet, she had a bad day (reflux came back with a vengeance, lots of gas, stomach discomfort) and I realized that she'd had lots of dairy that day. So we cut out dairy, and she got better again. Then a few weeks later, she was having some intermittent weird symptoms - some D, gas, stomach discomfort, some reflux - and I just went to the next thing that was on "the list" - soy (not an official list, mind you, but that's apparently the classic triad - gluten, dairy and soy.) We cut out soy, and the symptoms went away. If that hadn't worked, I was going to try corn....nightshades....etc., etc. It's a pain trying to figure out your intolerances....if it's not an actual "allergy", then a food diary/elimination diet is really the only way to figure things out. I cut out gluten in support of my dd, then later found out that I also had an actual intolerance to gluten and casein. I don't seem to have any other intolerances, but I've been careful not to eat too much of any one thing for long periods of time. I'm trying to do that with my dd, too, but her diet isn't as varied as mine - makes it a bit more difficult.

If I were you, I'd start with dairy (yes, it's a pain, but it's doable) and then go on from there, if necessary. Also, in retrospect, I realize that dd's recovery (I can't use myself as an example - I never had severe symptoms before going gluten-free) wasn't a linear progression - she had, and still has, good days and bad days (it's been 12 weeks.) But if you seem to have a more consistent problem, then I think it's wise to explore the possibility of secondary food intolerances.

Good luck!!

Rho

[horsegirl]

Thanks for the support, everyone!

I guess it's just hard for me to think about having food intolerances other than "just" gluten, which

seems like so much how it is! Gluten though, is not my friend, & I know how much better I feel when I don't eat it, so I definitely DON'T cheat, so I don't suffer later!

For those of you with casein & gluten intolerance, what do you eat? Are there websites you recommend to help with managing both intolerances?

I've had RAST allergy testing through my primary doctor, & all of those tests came back "negative"

(or least a value less than 35, which according to them meant negative). But I know there's a HUGE difference between "allergy" (IgE response) and intolerance (IgA response), which is probably what's causing all my problems. Guess once I'm off gluten a bit longer to make sure my pain & neuro symptoms aren't from it, then I need to start the whole elimination diet thing for other foods.

That's how I found gluten in the first place!

Thanks again for any suggestions.

M

[Guest thatchickali]

You could be having withdrawl symptoms.

[hathor]

You've already been tested for casein and found intolerant. You haven't eliminated casein and still have symptoms. Before you do anything else, cut out the casein. Many people do it. I know you are new to all this and it is normal to go through a grieving process for the foods you can't have. I know I did; I still have some pangs of regret every so often. But feeling healthy and knowing I'm doing what is best for my health is worth it. Eating something I shouldn't and then suffering really isn't worth it.

People have different symptoms. One really can't generalize. You won't know how you've been reacting to casein until you stop eating it. I don't mean to sound harsh, but that is the stark truth. Personally my reactions to gluten and casein are similar. With egg, I experience something completely different. Soy is different still -- it is the one that seems to give me joint pain. But there is no way of telling off the bat whether this is the way your body reacts to these things.

But you can manage it. I avoid gluten, casein ... and egg & soy ... and animal products, too. I find lots to eat, at least at home. And I know people who avoid all the things I do ... and corn & nightshades to boot!

As far as other intolerances are concerned, a food diary or elimination diet approach works. You could have had Enterolab test you for egg, soy & yeast and still could.

The only web sites I've seen for gluten free, casein free diet (and not adding vegetarianism into the mix) are those that recommend the diet for children with autism or learning disabilities. But I believe they also give some guidance as to what can and can't be eaten. Try googling on Gluten-free Casein-free diet.

A couple hints on going casein free. Casein or caseinates are frequently added to products, such as soy cheese. You need to read ingredients for these, as well as anything obviously diary (milk, cream, yogurt, whey, butter, etc.) I've read that ghee (the super clarified butter used in Indian cooking) has no casein left in it and is fine; I've had no difficulty with consuming it.

I have had some small quantities of goat's milk cheese recently, after 6 months of strict adherence to the diet Enterolab told me to follow, and don't have a problem with it. Once you get your symptoms under control and think you've healed enough to not have a leaky gut, you can test this out. But you probably don't want to go to alternatives if you have a leaky gut, because this could prompt your body to create antibodies to something else.

Oh, and switch to dark chocolate

[confused]

It is hard to give up casein, but if i can do it anyone can. I was an cheese freak. I would eat an whole slab of cheese at one time, i had at least one quesadilla a day. I would add cheese into everything i ate. I would make lasagna aor baked ziti once a week and have left overs for lunch. There was not one one thing i would eat that didnt have cheese in it. It was hard to give up casein, but i now feel the best i have ever felt, and to boot i lost weight givining it up. I had bad mood swings and joint pain with casein, and they have all disappeared. Soy would make me hurt also, so I had to give that up. It is hard to find things to eat but it is so much better to feel great.

I stick to the basics most days

For breaky i have fruity pebbles and almond milk or, rice cakes and peanut butter. Then for lunch i have lunch meat and chips lol, then for dinner an meat, potato and veggie. And my staple is lara bars.

I have had to come up with new dinner ideas, but every time i come up with something the whole family loves it, no one misses cheese in this house lol.

paula

[horsegirl]

Thanks again everyone. Wow! I do appreciate all the information & advice.

How do I know if I have a "leaky gut"?? Is this based on dietary responses alone?

I guess I really do need to go casein free to see how I feel. Guess I was just waiting to see how I was doing once all the gluten was out of my system. But, since I tested positive for casein, that should be enough to tell me, "Hey dummy, quit eating it!!"

Has anyone found a "cheese" substitute (without casein) that actually melts??

I tried one in the past, & it wouldn't melt even at 450 degrees in the oven for 20 minutes!

That's just not right!

Martha

[newlyfree]

Sorry I can't answer the how to know if you have a leaky gut question - I'd love to hear the answer, though! I suspect mine's pretty leaky.

Also - ghee is casein-free? Is there a way to make it out of regular butter? I am diary-free now and would love something else to stick on my rice besides olive oil!!

Thanks!

[mftnchn]

You've been given lots of good advice. Just remember that 11 days is barely a start, when it takes our intestine 1-2 years to heal.

I think I would stop the milk first at least for awhile, and see what happens. Then you could try eliminating groups of food just to see what happens.

For example, eliminate all grains for 5-10 days, and then test the ones you use the most. Corn is the hardest one to eliminate, as it is in everything it seems like. Test them one at a time, waiting for any symptoms to resolve before starting another and try to have at least 2 days between (due to cross reactivity among grains with similar proteins).

Then eliminate and test legumes the same way. (soy and peanut are probably the biggies here)

Then eliminate and test nightshades (often cause joint problems).

My allergist told me these three food groups are the most common culprits, also milk and eggs.

You can get testing, but this should be viewed as a guideline only. The true test is food elimination and challenge.

Finally, you can have a concurrent issue, as autoimmune diseases are common among celiacs. For me, lyme disease has been the main cause of my many years of joint/muscle symptoms.

[hathor]

I don't know for sure about diagnosing a leaky gut, rather than inferring one.

I've heard there are nice soy cheeses out there. They may have to be ordered online. I remember someone telling me once about one ... only this was right before I found out I can't have soy and so I've forgotten. I can't even remember what forum it was. You may have to try what you can find in stores and see what you think. Tastes do vary. There are veggie folks who rave about the "cheesy" flavor of nutritional yeast & sauces made from it. I always thought the stuff tasted weird myself ... Be sure to check the labels; some soy cheese has added casein or caseinates.

Both of these things could be made the subject of different threads so others will see the questions right off. Of course, maybe you've done this and I haven't seen the threads yet. If so, never mind ...

As far as ghee is concerned, I've seen people on this forum and elsewhere (e.g. Open Original Shared Link ) that it is considered casein and lactose free, but not dairy free. It is labeled as casein free (e.g., Open Original Shared Link. If you google on "ghee casein free" you can see the same hits I did. You can also look for recipes. I found this one: Open Original Shared Link

But, I don't know, it seems easier to buy the stuff if you want it. For me, I would worry about not burning it or straining it enough, bacterial contamination, etc. But any recipes that require special care seem to be beyond my abilities