Lots Of Questions....please Help!

[Holly4]

I am really in need of some answers....I don't know if I have Celiac disease or not. I had strep twice in a row. Followed by a week of terrible diarrhea. I have always had problems with constipation and gas/bloating. I asked my doc to test for celiacs. He said he would but that I probably didn't have it. My tissue transglutaminase came back as a stong positive and my deamidated glidin came back high as well. My doc said that didn't really mean I had celiac. Since that time, I have had headaches, dizziness, and really numb and tingling hands and feet, my grip in my hands is almost non-existent. My hand seem to lock into whatever position I leave them in...I am really shaky and super tired. This all came on so fast. I am a marathon runner and triathlete and am used to logging tons of miles. My legs have been cramping up really bad on runs and my feet are numb all the time. I have had to almost quit working out completely.

I have been told not to change my diet for testing purposes. I did quit eating gluten for about 3 days and seemed to lose my headache and some of the numbness in my hands.

Please respond especially to the loss of dexterity and numbness and tingling! I am getting really worried and wonder if I need a biopsy to confirm this.

[srall]

Holly, a lot of symptoms that you have I also had. I tested negative for celiac, however dropping gluten, dairy and corn from my diet changed my life. It's worth a try to try a new diet for a few weeks and see how you feel. Good luck

[AzizaRivers]

Well, it depends on what you mean by "confirm." You have a few options from here:

1. Request a referral for a biopsy. If your intestines are damaged, you need to go gluten-free.

2. Try going gluten-free and see what happens. If you get a biopsy that turns up negative, still give the diet a try and see if it clears up your symptoms. There are plenty of people on this forum who didn't test positive on both the blood and biopsy (in fact, there are some who were negative on both but still healed up on the diet!). If you don't get the biopsy and the diet works for you, stick with it.

[mushroom]

Welcome to the board!

I gather that your doc intends to do an endoscopy with biopsy to confirm the celiac diagnosis; I hope, for your sake, he does it soon, because it sounds like you need to get off gluten pretty quick. You do, however, need to keep eating it until the scope. Yes, the neurological symptoms are indicators of celiac disease as well as the GI problems. You do not have to have the biopsy - it is entirely up to you. If you are confident of the diagnosis you do not need a doctor's permission to go on the gluten free diet. However, if you want the piece of paper from the doctor he seems to be only prepared to give it to you if you have the biopsy. But with two strong positives on blood, TtG and DGP, along with those symptoms, I personally would consider myself diagnosed. If you were to stop eating gluten now and later wanted the biopsy, you would have to go back on gluten for 2-3 months to get a valid test, so it is more like a now or never decision, because for most of us, once we go off gluten we could never consider eating it again for two solid months.

As I said, I hope he is going to do it soon - if not, try to get it moved up, tell him how bad your symptoms are, cop a plea , do whatever it takes to move up the list.

[sb2178]

Be sure that your doc follows up with extensive nutrient status testing. If you've ever had a stress fracture, maybe even push for bone density.

Thinking... B-12, folate, iron (ferritin!!! as well as the standard panel), magnesium, zinc, potassium, vitamin D, and that's all i remember at the moment.

Be prepared for a slow recovery, but the more obsessive you are about completely following the diet, the faster it will be. If you're catching it sooner, like, say before you lose 20 lbs, it'll probably be easier. It's frustrating as a runner*-- I've struggled most with the loss of control of my body and the fact that I was not able to do what I wanted to for a while. There was a point where I could not run 2 miles. Heck, I could barely walk for 10 minutes without a break. Basically, I've resigned myself to no serious endurance for a while and am focusing on just doing really enjoyable 5 or 10K jaunts through scenic places. (And I've always been slow, so it's not like I was ever putting in 7 minute miles for long runs or anything.) And skiing. I'm spending my disposable income on skiing this year. (But it goes a lot further with the running...)

*Have done marathons, but do not consider myself a "marathoner."

[cassP]

i dont understand why your doc would say you didnt have it when your ttg was "extremely" high, and your Deamidated Antigliadin was high as well- plus you are describing the tingling/numb hands and feet- which so many Celiacs get. i assume they get it from a deficiency in B12- have you had your B12 levels checked???

maybe your doc is just unsure because it's a fairly new disease to our American medical system- and wants a biopsy- but i say if those 2 antibodies are highly positive- that's really all the proof u need to abstain from gluten.

good luck with your testing & dx

[Skylark]

I am really in need of some answers....I don't know if I have Celiac disease or not. I had strep twice in a row. Followed by a week of terrible diarrhea. I have always had problems with constipation and gas/bloating. I asked my doc to test for celiacs. He said he would but that I probably didn't have it. My tissue transglutaminase came back as a stong positive and my deamidated glidin came back high as well. My doc said that didn't really mean I had celiac.

Your doc is an idiot. Deamidated gliadin is 98% specific for celiac disease and combined with the TTG there isn't much room for doubt. Get biopsied as fast as humanly possible (or opt out entirely) and stop eating gluten!

[sandsurfgirl]

Those blood tests mean you have celiac. Your doctor doesn't know how to interpret them. You only need one of the tests to be positive. There are no false positives. My doctor tried to pull this same thing with me. I was very sick and no way was I going to keep eating gluten for however long to do a biopsy.

I did take my labs to another doctor who knew about celiac just because I wanted hNis information and he said Yep it was celiac.

Go gluten free and either educate this doctor if he is willing to listen or find another doc. No need for you to suffer any longer!!

I have been gluten free almost a year. I felt better in some ways right away but it was a full six months before I was symptom free. You have a long road of healing and recovery. Start NOW!! I am literally a different person now.

[FooGirlsMom]

Ditto what everyone else said. I've had a number of symptoms you mention also. The neuropathy was one of the last symptoms to develop about 3 months before going gluten free. Some of what you describe sounds like a mixture of auto-immune response (symptoms of fibromyalgia, MS, or Lupus) and vitamin deficiency. When the gluten affects your small intestine (Celiac) you will start to have vitamin issues.

Whether or not you opt for the biopsy (I too would consider myself diagnosed with your blood work results)it would be wise to follow-up with the doc to test you for vitamin levels - iron, b12, etc.

Just be aware that when you go gluten-free, while many of your symptoms will reduce or go, many of us have had to take other foods out of our diet to stop most of the symptoms. For instance, I have an arthritic problem in my right hand. If I eat corn or soy, I get painful swollen joints in my hand, the joints pop and want to stay in place & I get a mild migraine behind my right eye. The days I have stayed off both - I feel fantastic. Another example is heart palpitations & tingling in my feet (circulation issues I think) from either soy, corn or dairy. These things may go away in time. I never remember dairy or corn affecting me before so maybe in months or a year I can eat them again.

It sounds to me like you have a big change coming when you go gluten-free in your future & root out all secondary food sensitivities while you heal.

Hang in there and please let us know how you're doing.

FooGirlsMom

[Luddie]

Interesting topic and I, too, need some help in figuring out just HOW to figure our what else I might be sensitive to. I try to keep a diary of what I'm eating, drinking and doing but somehow I get bogged down and don't know how to interpret it. I have, after reading lots of the messages on this website, decided to at least go grain free for a while (in addition to gluten free)...so no more corn, soy, oatmeal, or rice of any kind. I've also dropped the wonderful, tasty, yummy, soooo gooood dark chocolate from my diet. I've been doing this for almost a week and I can't tell if it's making a difference or not. Sometimes I think it is, and then I'll get hit again with pain in a finger or wrist or hand or shoulder! They always seem to start around 3 am every night. I dread going to bed even when I'm tired because I know in the morning I'll be hurting again!

How have you folks tried to figure out what you can (and most importantly, can't) eat?

I don't think that's really the way an elimination diet works, though, but if it works for me and gets rid of my pains I'll be ecstatic!