New Diagnosed Celiac, What To Do?

[nogluten77]

I am newly diagnosed celiac patient, along with my son. It all seems so overwhelming, I was wondering if you guys could offer suggestions? I have been to Whole Foods and another health food store, and found the different flours, and some other gluten free products. What have you guys found to be the most difficult/most likely to cause gluten exposure? Are things other than food that I should be aware of? Thanks for any suggestions!

[rinne]

Hi, Welcome.

I'm all pretty new to this but finding this place has been incredibly helpful.

Eating pretty simply has helped me a lot, meat, fish, fruit and veggies, it saves on reading labels.

Do you like to cook?

[nogluten77]

I really like to cook, but as I am sure most people can relate, don't have lots of time to spend on cooking. I am motivated to learn, just feel overwhelmed on where to start...Thanks for your response!

[lorka150]

in addition to rinne's response (eating a basic diet), i've found that the few things that i do need to read labels on, i stick to. for example, i eat a whole foods vegetarian diet, and i know which shampoo, make up, soymilk and baking suplpies that i use without a problem. it saves me from always checking new things out.

good luck!

welcome to the board.

[rinne]

I've seen some threads here with great ideas for meals. Do you know how to get around the forum?

My diet is pretty limited. I found that after I cut out gluten I continued to be bloated and constipated so I cut out dairy too and that made a big difference but it does make eating more of a challenge. I also seem to be having problems with eggs. Lots of Celiacs have problems with dairy initially but once the villi heal can re-intoduce it. Sorry if I am telling you stuff you know.

If you are comfortable sharing something more of your story I'd be interested in knowing how you were diagnosed.

[nogluten77]

I was having problems long before being "unoffically" diagnosed with celiac disease. About five years ago I began to have problems with my balance. Once in a while (like every 3-6 months) I would have a bout of vertigo, typically at night, that would suddenly wake me out of my sleep. For days afterward I would feel off balance, headache, and brain fog. The first time it happened I freaked out, room was spinning, could't walk straight, and thought for certain I was having a stroke or something. Also during this time I began to have serious anxiety issues, and horrible migraines. I went to doctor after doctor trying to figure out what the heck was going on with my body. The majority of the time I heard that it was an anxiety issue. I knew I was experiencing anxiety, but I kept telling the drs that an hour or so after eating the symptoms would slowly start, and by the middle of the night I was a dizzy mess. On a sidenote, from the time I was a child I had suffered from bouts of severe cramping and diarrhea, muscle and bone pain, and fatigue. Anyway fast forward....Finally I had found an ENT who diagnosed me with something called Meniere's Disease. It is an inner ear disorder that causes severe vertigo, nausea, and permenant damage to the ear and hearing. At that time the doctor said that many patients with this disorder often have food allergies, and decided to have me food allergy tested. I was found to be allergic to wheat, and I was told to go on a wheat free diet.

After a couple weeks on the wheat free diet I was feeling better, but still not great. At that point someone had given me a book on food allergies, and after reading realized that maybe I had an intolerance to gluten, not just wheat but to all gluten. During this time my son began having severe diarrhea, weight loss, etc. and took him to the dr and mentioned that I had read about something called celiac disease, and thought maybe he had it. The dr looked at me as though I were crazy, and said I doubt it, but after much pushing, the blood was taken for the celiac panel. By this time I had ben wheat free for almost 2 months...sure enough his blood work, and later his small bowel biopsy came back positive. His sister was negative on blood work, and negative on small biopsy, but I suspect she has some type of intolerance to gluten as well.... I have not been formally diagnosed, but with my history, and since going all the way gluten free surprise surprise rarely migraines, gaining weight finally ( I am 5'9 and was weighting 115 at certain times in my life) much better regarding BM's...

So there is the story...much longer than I had anticipated! It was frustrating because after my son was diagnosed, I think the dr just assumed I knew what to do because I am an RN...there was no referral to a dietican or anything! Yes, I may understand it, but the limited amounts I have read, there it is so much more complicated then what the drs say, or even the minimun info I received in nursing school. It sure is nice to have a place to discuss things with other people who are actually living with it!

I forgot to mention that my orginal issues surrounding my balance and vertigo has improved tremendously! When I experience the dizziness/vertigo, mirgraine or brain fog, I can say with almost 100% accuracy that I have been exposed to gluten somewhere....

[rinne]

Getting very sleepy...

But I wanted to respond to:

  Quote

I was having problems long before being "unoffically" diagnosed with celiac disease. About five years ago I began to have problems with my balance. Once in a while (like every 3-6 months) I would have a bout of vertigo, typically at night, that would suddenly wake me out of my sleep.

In the past year I have noticed a sense of vertigo occasionally but since I stopped the gluten it has improved.

You will find this board amazing, there are so many symptoms we share that are just not generally recognized. Not long ago on one thread women were talking about problems with pierced earrings when they had been glutened.

I am self-diagnosed also on the basis of a lifetime of problems with eating wheat, a dramatic weight loss and gastric distress and an incredible improvement since going gluten and dairy free. Plus I have a sister with Celiac and IBS.

[AndreaB]

Hi and Welcome.

There is a thread that a member TCA started about starting out. You could PM her and get the name of it...I forget it. To PM go to Control Panel, Compose New Message. Type in TCA and a topic then type your message and send it. Just ask her for the title of the thread she started for new people.

[nogluten77]

Thank you so much..I will try to do that!