Newly Diagnosed - Having New Symptoms

[Jodi399]

Hi,

After 10 years of migrains, heart palpatations, IBS like symptoms, and various other odd symptoms, I finally switched to a great doctor who took the time with me to diagnose Celiacs. She recommended I go to a GI for a formal diagnosis with a slew of tests involved. I made the appointment with the GI, but then cancelled it because after a month of a strick gluten-free diet I feel tons better. And the thought of going back on gluten just to get a positive diagnosis is terrifying to me. I haven't had a heart palpatation since the day I went gluten-free ( I was having them every single day for 10 years), my migrains have also gotten much less frequent, and my IBS like symptoms have gotten a bit better, although not a lot. I have been gluten-free now for a month and a half.

Here's my delema.... I'm having new symptoms, which I've never had before. I've read on this forum that these are normal symptoms of Celiacs, but why would I be getting them now after being gluten-free for a month and a half? I'm having awful muscle aches. I feel very fatigued, foggy headed, and achy mostly in my arms, but a little in my legs too. Also, my heart feels like it's pounding. Not like a palpatation, or like my heart is beating fast, just like it's beating hard.

I've been vegetarian for over 3 years, so now with this gluten-free diet, I'm concerned that I'm not getting enough of some vitamin or nutrient that is making me feel this way. I take a daily multi-vitamin, and I have a very healthy diet, eating mostly fruits, veggies, and a lot of tofu. However I have now started eating gluten-free pasta, gluten-free waffles, gluten-free pizza crust, and gluten-free cereal. Is there any possibility that these gluten-free foods actually contain some sort of Gluten which might be making me feel this way? Honestly, this gluten-free diet wasn't that hard for me to get used to. But now with these new symptoms happening I'm feeling a bit defeated and depressed.

Any help would be appreciated.

[kareng]

I think vitamin deficiencies from the Celiac and your restrictive diet should be investigated. Maybe you could get your doc to test for those?

[ciamarie]

It's also quite possible there's some other ingredient that's bothering you, which might take a bit of detective work to figure out. You might want to keep track in a food diary, along with ingredients of what you're eating. Or check the items you eat frequently and see if they have one or more ingredients in common.

The best bet may be to figure out what single-ingredient foods you do o.k. with and just eat those for a few days, then introduce one of the other items and see what happens. (Elimination diet, basically) I've been on a gluten-free diet for about 3.5 months now, and I'm still trying to work out what works for me and what doesn't. It can get frustrating, but overall I'm feeling so much better that I just keep plugging along and taking notes.

Editing to add, one thing I've found helpful is to do a search using the search box at the top of the forums page, or on your favorite search engine, and enter the brand and item name with gluten-free and see if anything comes up. Some companies are better than others at labeling, and some make products in dedicated gluten-free facilities and some share facilities where gluten products are made, which sometimes makes a difference if you're pretty sensitive. Also read the FAQ's linked at the top of the forum topic page.

Lastly, make sure your multivitamin and any other supplements are gluten-free. And check their other ingredients too, just in case.

[Jodi399]

Thank you for the helpful hints, I will try the food diary, as well as the elimination diet. I've also made an appointment with my PCP to request a test for any deficiencies.

[Takala]

Some brands and individual batches of a few kinds of "gluten free" foods may be cross contaminated with either gluten or another ingredient that you may be reacting to - if you ask, "how can this be ?" remember if you are in the U.S. we have no labeling standards at this time (Feb 2012) and everything re: gluten status disclosure is voluntary. Hence you may find yourself feeling "off" after consuming a 'gluten free' item, while feeling better after eating a regular item with a better manufacturer who is disclosing what is actually in the product., or what it was exposed to during manufacturing. I have had to give up some brands of alleged "gluten free" foods, and go with a non gluten free regular item, with a manufacturer which is saying "run on lines that also ran xxxx," as a result.

You may be one of the few people who also reacts poorly to oats, even gluten free oats, for example. Other common problems are too much soy not agreeing with your thyroid, etc.

Remember that everything that goes into your mouth needs to be gluten free, supplements, etc. Some people are so sensitive, they need to switch out personal care products, especially if they have long hair or use a lot of lotion. Also, if you have indoor pets, their food might be cross contaminating you, if they lick you or drool. Your spouse or boyfriend can also be a great accidental vector.

Also, if I were you, I would be searching for "gluten free vegetarian" blogs on the internet, to get some ideas. Eating a lot of grain based foods high on the refined carbohydrates, along with fruits and just tofu for protein, can really not work well sometimes for our individual metabolisms, even if we have been told that is is "healthier."

[lucia]

I was a pescetarian (vegetarian + fish) for over a decade, and my husband is still vegetarian. I have no problem creating nutritious, balanced, gluten-free, vegetarian meals at home. Not that I eat just tofu. My diet includes a variety of cheeses, dairy, nuts, beans and eggs, as well as, occasionally, soy. I have had a nutritionist review my diet to make sure that I was eating well.

That said, when I was first recovering from gluten intolerance/celiac, my acupuncturist strongly recommended adding meat back into my diet. I did, and found that drinking chicken broth daily for 4-5 days had a big effect on my energy. Interestingly, I discovered at that time that historically even in culturally vegetarian parts of India, the very young, elderly, and sick were all given bits of meat in their diet. I pass that advice on to you, and you can make your own decisions around it. (My husband is vegetarian for cultural/religious reasons, so I know vegetarianism can be a strongly-held belief. I also think that skewing towards a vegetarian diet is healthier for us all and for our planet.)

I'm happy now to have meat back in my diet though since it opens up possibilities when ordering in restaurants or when other people cook for me. I've eaten at restaurants where there was only a single meat dish on offer as a gluten-free alternative. I can't eat at Indian restaurants every time I go out!