New Diagnosis With Odd Post-gluten-free Reactions

[danemom3]

I have two teenaged children, a 16 year old daughter and 17 year old son, who were recently (3 weeks ago) diagnosed via blood work and symptomatology (and response to gluten-free diet) with celiac disease. My son was a very typical and sadly misdiagnosed example (very thin, chronic abd symptoms, poor performance in school which I now know is classic "brain fog," allergies, asthma, etc.), while my daughter experienced onset of symptoms around puberty two years ago, which is how we discovered the disease, thanks to a wonderful physician who took time to evaluate her GI symptoms and total exhaustion/lethargy. My son's diagnosis was the result of screening after my daughter tested positive, he had been sick so long he did not really know it wasn't normal to feel so poorly all the time.

My daughter has been gluten-free for three weeks, my son for two. My son has experienced a remarkable improvement in general well-being, improved energy levels, etc., and my daughter has experienced improvement in her GI symptoms and exhaustion. However, since going gluten-free, my daughter has had terrible problems with dizziness, feeling faint and lightheaded, "cloudy" vision, etc. We have been to the doctor three times and a nutritionist, and bloodwork and urine ruled out anemia and glucose and whatever other things they can diagnose that way--although I've since read that there can be vitamin deficiencies, etc., that should be tested for that may cause these symptoms. However, her dizziness (accompanied by trembling, a panicked feeling, shaking) only occurred AFTER we began the gluten-free diet. I am wondering if there are physiologic reactions in the body as it adjusts to the dietary changes that could be causing this problem or if others have experienced these problems during the initial stages of gluten-free lifestyle. We are concerned whether to pursue neurological evaluation or other specific testing, or if others had similar experiences so that we can try to "wait it out."

Also, my son (who has lost about 10 lbs since starting the diet, which he could not afford to lose, as he is 6'6 and 164 lbs and a very committed high school athlete, basketball and swimming), had an episode of fainting at practice about a week into the gluten-free diet. At the doctor appointment the next day, his heart rate was 41 and an EKG showed arrhythmia and pauses between beats. He was referred to a cardiologist who put him on a Holter monitor for 24 hours (this was Friday) and scheduled an echo for Monday. He mentioned that his symptoms may be related to malnutrition, almost similar to that seen in anorexics. Does anyone have input on whether this has happened to them or family members, or if it may be a reasonable diagnosis under the circumstances? We will have more information at his follow up on Wednesday, but I'd like to be informed and prepared to ask intelligent questions. As I mentioned, he says that he feels much more energetic and his GI symptoms have virtually disappeared since going gluten-free, but he has noticed the "racing heart" and lightheadedness on exertion that we mentioned earlier.

I have done a great deal of research about the gluten-free diet and we are following it religiously. My son is a picky eater, but I am doing my best to load him up with calories and substitute home-made gluten-free versions of food he likes (pizza, fried chicken tenders battered with gluten-free flour, pancakes, cookies, etc.) I know it will take time for him to regain the weight he's lost. I have replaced our hygiene products with gluten-free choices so I am fairly certain neither my son or daughter are being accidentally glutened, which I've read could trigger dizziness like my daughter has experienced (but this started only after we went on the diet). We've bought new pans and utensils, a separate toaster, declared one counter in the house "gluten free prep," pretty much eliminated gluten for the other family members outside of prepared bread kept in bags (we are all eating the gluten-free cookies, desserts, entrees, at meal time). I've also started both celiac disease kids (my older son's blood work was negative) on multivitamins, calcium and yesterday, a B12 supplement (all gluten-free).

I would really appreciate any input on the dizziness and the heart rhythm issues and whether or not we should be pursuing more aggressive testing or just relax and try to adjust and give their bodies time to respond to the gluten-free diet.

Thanks for all the wonderful information I've found on this site and for any responses. Sorry for the long post.

[Ursa Major]

Hi, Danemom,

What your kids are experiencing sounds an awful lot like withdrawal symptoms to me. You see, gluten causes addiction, because it acts in your body much like an opiate. So, when you go off it, you'll react as if you are quitting an opiate cold turkey, and therefore you'd expect withdrawal symptoms.

Don't panic, give it a few weeks, and their bodies will adjust to the new diet.

The book I've bought that was the most helpful in finding out the facts about gluten is 'Dangerous Grains', and I highly recommend it. After reading it, you might want to quit gluten, too.

[jerseyangel]

I agree that you're children's symptoms after going gluten-free are most likely healing symptoms. Since you are diligent about having them monitored by the Doctor, I would now take a "wait and see" approach. After I went gluten-free, I also had a lot of dizziness and fatigue. It wasen't until the 4th. month that I began to feel better. They will get better--it just dosen't happen overnight.

[aikiducky]

I just wanted to add a voice of support. I agree with the two previous posters, I also had similar symptoms for the first few months after going gluten free. Your children are very lucky to have a family that is taking this so seriously! It sounds like you're doing a great job, just give it time ( a lot of time!).

Pauliina

[Nancym]

Your daughter's symptoms remind me of low-blood sugar attacks I used to get. Are they eating a lot of starches and sugars? That'll do it to me every time. I try to concentrate on eating low-sugar foods, lots of protein and veggies and low-sugar fruits (berries are great!).

There are all sorts of nutritional deficencies that happen with this disease. I think your intestines are so mangled when you first go gluten free it is still hard to get adequate nutrition and even hard to digest foods you should be able to. I think that is why the SCD diet is used, to get everything stablized and healing in the gut before adding in new foods then adding them in slowly and checking for symptoms.

This might be of interest to you: Open Original Shared Link

[Guest nini]

I have to agree that this sounds like the withdrawal symptoms I experienced when first going gluten-free, it was a good 3 or 4 months before I felt better from the dizziness and faintness... I fainted at work one day... Make sure they are getting plenty of protein and energy foods... I found that I have to supplement my diet with B-12 otherwise my energy is very low. I was 34 when finally dx'ed. When I was in high school, my parents thought I was anorexic or bullimic... they thought I was making myself throw up after each meal... They didn't believe me when I said that I couldn't help it... Kudo's to you for paying attention to your kids symptoms and getting it properly dx'ed. I'm still angry at my parents for ignoring my symptoms and thinking it was "in my head" they sent me to a shrink...

Some things you may want to keep on hand for them... bananas for potassium, Larabars for energy and protein (these are awesome, they are a raw fruit and nut bar that you can keep in a purse or backpack) mozzerella cheese sticks for protein (if they aren't having problems with dairy), tons of fresh cut fruits like pineapples and strawberries and melons to keep up their blood sugar...

make sure they have plenty of healthy foods to snack on, and that they can snack whenever they feel the urge... they may need to snack on smaller meals throughout the day instead of say 3 large meals... keep in mind their bodies are going through a healing crisis... and they need the proper fuel to keep them going. I've found that unfortunately a lot of nutritionists don't understand the gluten free diet well enough to give accurate advice, so ask away on this forum and you will get lots of helpful advice from those of us living with this.

[danemom3]

Thank you for the helpful responses. It is very reassuring to know that others have experienced this. I am going to research the wheat withdrawal and see if there are recommendations to ease that transition period. I also had wondered about blood sugar in my daughter, but they said her CBC was normal, so maybe that is not the case. I am going to try to help her be conscious of when she is eating, sugars, carbs, proteins and see if anything brings on an episode. Thanks for the encouragement to wait it out, since it seems this is not unique. The fear that now there was something else wrong, after the years of misdiagnosis with celiac disease, made it hard to just wait. Thanks.