Struggling After Surprise Diagnosis

[MNAnne]

Hi everyone, I could use some help. I was just diagnosed with celiac (+ blood test and + biopsy). This came as a complete surprise to me; my doctor tested me on a hunch at a regular physical. I was mostly asymptomatic, had occasional IBS-like symptoms, occasional headaches, etc.

So I started the gluten free diet and... I got worse. Major fatigue, diarrhea nearly every morning, blood sugar crashes, horrible moods, no appetite, no energy to exercise. It's been 4 weeks. As far as I know, I've been totally gluten free. I have eliminated or reduced dairy, alcohol, spicy foods. I have had my hemoglobin, calcium, magnesium, potassium, and a couple of other levels checked and all were normal. I am low on Vitamin D but so is everybody else in Minnesota. My doctor ordered breath tests for lactose and fructose but it will be a few weeks before I have results.

I just don't know how to start feeling better, and it's very frustrating to feel worse than I did before I knew I had this. Compounding matters, I am a stay-at-home mother of two small children who are exhausting in the best of times, but even more difficult with the stress of all the recent doctors appointments, diet changes, etc. Everyone here really needs mommy to feel better, and this is brutal.

Any ideas?

[Jestgar]

What are you eating? Did you add in a bunch of gluten-free substitutes? Or switch to more natural whole foods?

[StacyA]

Wow, what a most excellent doctor! That's great to get diagnosed now, rather than 10 years from now with a whole host of the problems you'll read about in peoples' signatures on this forum. If it's true celiac disease - and blood and biopsy are the true tests - then a gluten-free diet can prevent a TON of life-threatening problems.

Some people do over-do the 'gluten free' products at first - and they have a lot of sugars and oils to make up for no gluten and too much of that would make anyone sick. You're still transitioning, so give it time and it sounds like you can trust your doctor on what else to look for, if anything.

[scarlett77]

I agree... I would start off with pretty basic naturally gluten free foods. Fruit, veggies, meat, rice, beans, etc. I have heard that some people actually need to do an elimination diet first because Celiacs are very prone to have other sensitivities too. That may be something to consider. Also did they check your iron and thyroid?

[MommyStina]

I was also diagnosed when we had two very young children at home (15 months and 2 1/2 years). Three months after that, I still was feeling cruddy and having a lot of the same symptoms as your post describes (exhoustion, diarrhea, headaches, etc.) It is exhausting when Mommy doesn't feel well! After those first couple of months, I sought the help of a GI dr. that specialized in Celiac disease. What a help! The first couple months were the hardest, but here is the advice I can give you...

As far as the diet goes,I totally agree that you need to stick to very basic until you get used to things. I also made the mistake of trying too many substitutes before I really healed. Basic is best. I started with lean meats (chicken and fish, we steered clear of anything else for quite a while), rice, potatoes and fruits and veggies. I eliminated dairy, spicy, fatty, and alcohol for a good six months. One thing we did too was go organic as much as possible on fresh stuff. Watch for hidden sources or things you wouldn't think about (medications, vitamins, or anything else you might take on a daily basis). I was also quite sensitive to additives and chemicals. It takes time, but you will feel better eventually. Add things in slowly as you start to feel better. You may find that there is a threshold for things, too(for example, I can eat ice cream one day, but not two in a row, or tomatoes same thing). Here I am, three years later and doing much better.

As far as the children go, my doctor told me that until I felt well (well meaning considerably better), the only energy I needed to expend was to take care of my children. I have a difficult time with letting things not get done, but it is something you have to do for you! Don't be afraid to ask for help (friends, family, neighbors, responsible high schoolers) to watch the kids for you for a few hours or help clean the house or go grocery shopping. Take a trip to a park or playgroud where there is a bench for you and plenty for the kids to keep themselves busy with. Take a trip to the library for several "new" movies you won't feel guilty about letting the kids watch. We also invested in a sand box and plenty of cheap beach toys...sand kept mine busy for hours!!! You need to take the time to recover and let your body use the energy for getting better. I speak from experience. Good luck to you!