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Possible Celiac?

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Hi! I am brand-new and in the midst of a variety of health issues and hoping maybe to get some advice on celiac testing. I am 41 and just ended a nasty bout with mono, of all things, over the entire summer. Toward the end of my mono episode, I began getting severe migraines every other day. My neuro started me on inderal, which has calmed the mega-migraine, but I still get headaches each and every day.

In addition, I started getting odd bouts of bloating, stomach cramps and the runs and occasionally nauseated. I lost about 15 lbs since mono hit and it hasn't returned....not that I am really complaining there. :)

I get pins and needles in my legs or at times where my muscles feel like they have suddenly run a marathon. They ache, feel weak and just don't cooperate well I want to get some sleep. This isn't all the time, but sometimes I run a low fever of about 99-99.9 with no other symptoms. Very weird, but docs says I am okay.

Anyway, I also have always had hair loss issues....it got worse with mono and then it basically started coming out in huge, scary amounts. I got a peculiar itchy scalp after the mono was out of my system.

I am usually extremely tired all of the time, especially after work. I have been that way for a long time, but now I battle headaches and fatigue on a daily basis. With two little boys, it makes the afternoons taxing. Not just normal tired, but where I need to take a long nap or lie down every day for an hour..sometimes to three hours.

The truth is that I have been tested for everything this summer from thyroid (only marginally low and I am on a very meager dose of Synthroid) to lupus, valley fever, MS, nerve conduction testing on arms and legs. My blood tests are extremely normal and my brain MRI was also just fine. In fact, they didn't feel I could be any healthier for a 41 yr. old....no cholesterol, good blood pressure. I do have tachycardia issues, which is why the cardio and neuro also liked the inderal for lowering heart rate and migraines. But, when I kept returning and insisting things were not okay....they seem at a loss.

My mom has a lot of friends who have celiac and she asked me to consider getting tested. She also suggested just trying gluten-free dieting and then adding it back in to see if I might be sensitive to it. She has seen friends who have suffered migraines and have been able to come off of meds once they were diagnosed with celiac and on a gluten-free diet. She said a lot of my symptoms match what her friends have had as well. (we live on opposite coasts, so I don't know any of them personally)

I did hit the library and got caught up on celiac and gluten intolerance. I decided to try eliminating gluten to the best of my ability....I mean, wow...tricky! Anyway, after two weeks, my hair is staying in my head...hooray! The hair loss is very noticeably lessened. I was careful to choose a gluten-free shampoo.I do think that I ate gluten here and there, because I would occasionally get a horrendous bout of stomach pain, the runs and nausea a short while after eating. I dont know that it really cleared out the fatigue or headaches, but my guess is that two weeks on the diet with obvious slips would not be enough time to really see changes. I did feel some good bursts of energy.....even enough to venture out with my boys on my own for the evening. Which sounds silly, but that is how unwell I have felt. But now, I can see that gluten could be the answer to my ills, so I intend to get testing done. And if not, at least I can rule it out.

My questions are:

What type of doctor is best for diagnosis in celiac or digestive issues? Any recommends in the Phoenix/East Valley area?

Is it possible to have celiac symptoms begin or br triggered after a major illness like mono? (my only diet issues to now were lactose intolerance)

How long should you be "on" gluten prior to celiac testing, ideally? I don't want to skew any results.

How long on gluten-free diet before you noticed some improvements in your symptoms?

Thank you so much!!!

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If you want to be tested you should start eating gluten again right away, and stay on it until the testing is completed. The antibodies drop off when you stop eating gluten, and that makes the testing even more unreliable. Doctors reccommend different durations for how long to eat gluten before testing. Usually it is in the range of 6 weeks to 12 weeks though. Your GI will tell you how long you need to be eating gluten for the tests. You could look in the doctors thread to find a GI who knows about celiac first. Or check with a local celiac support group in your area for their reccommendations of doctors. You need to ask for the ful celiac panel. Often the GI will want to do an endoscopy after that, but not always. Write down your symptoms ahead of time and also how they changed when you eliminated gluten. That can help the doctor understand your situation better.

I had some improvements in a a few days after starting gluten-free. But it took 4.5 years to feel completely well again. Progress can be intermittent and sometimes seems to go in reverse.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com


Newbie Info 101


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If you have only been eating gluten-free for 2 weeks, then if you start back eating gluten now I'd suspect you should be fine for testing by the time you get in to get tested, if it's in the range of 2-3 weeks out. If it's at least a month or more out that would probably be better, just in case. That is just my not expert opinion from having read a lot of others' experiences.

In addition to the excellent advice from GFinDC, that is.

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Everyone has offered excellent advice to you, and I agree with them. You should be tested immediately; however, even if the results are negative, you've seen for yourself that you do much better following a gluten-free diet, so I hope you'll continue to eat gluten free. You've only experienced symptoms for a short period of time, and, yes, a severe illness can definitely trigger celiac disease in a susceptible person. Also, I'm wondering if your doctor tested you for Lyme Disease. This is oftentimes overlooked and causes many of the symptoms you described. My daughter had Lyme Disease, and it took several rounds of antibiotics, but she eventually got better.

In the interim, if you'd like your muscles to begin feeling "normal" again, you might try adding 1/2 teaspoon of organic flaxseed oil (the refrigerated kind) and 3/4 teaspoon of safflower oil to a smoothie or glass of juice once a day. This fully oxygenates the cells of your body, and the muscles respond very quickly. Most people are unaware of the importance of healthy fats in our diet.

Good luck to you!

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Thank you all! I truly appreciate the advice; and yes, I am planning to continue gluten-free once testing is done and I get an okay to start.

On the vitamins....I had NO idea that vitamins had gluten. I was taking a multivitamin and constantly felt awful after it....very nauseated to the point where I just stopped taking them. I will have to read up on that more carefully, obviously.

Thank you again!

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