Waiting On Test Results

[Laennie]

Hello,

I'm brand new here. In fact before last week I had never heard of Celiac Disease. I'm still pretty overwhelmed by everything & my brain is jumping all over the place so please forgive me if this post bounces around. Right now I'm waiting to get the results from the Celiac Panel that was done on Monday. I keep getting confused on whether or not I should be trying to go gluten free right now or not. From the initial stuff that I had read, I was thinking no but when I talked to the doctor on Monday, they recommended that I start right away. I'm fairly positive that I have celiac disease after everything that I've read about symptoms because I have or have had most of them. I'm thinking if the blood test comes back positive I won't go for a biopsy. Plus I've seen some people's insurance has denied the biopsies & even though, when you are eating gluten, can be falsely negative. It seems to me that even with the tests out there the best way of knowing would be to just cut out the gluten & see what happens.

My mom read an article in the newspaper last week about a lady that ended up being diagnosed with celiac disease & it talked about her various problems & the things she went through & my mom thought it sounded just like me. So then I started doing research & I've been amazed. If I do have celiac disease so many of the problems or issues that I have had finally make sense to me. The only real things growing up that could possibly be linked is that I've had a lot of trouble with falling & it's progressively gotten worse. I fractured my left foot in 1997 & then broke my left ankle in 2006. I just severely broke my right leg in March after averaging about 1 fall per month for 5 months. I also had really bad chronic migraines from about 1996-2003ish. I suddenly developed some severe anxiety issues around the same time I became migraine free which has been very frustrating.

I never really started having any severe stomach problems until last year after I had my son. I went to the doctor several times & then got referred to a GI specialist. Had a colonoscopy done in January but they didn't find anything & just gave me the IBS diagnosis. I did what they said to do to try & make it better but nothing worked & in the last few months I've just gotten worse.

Other interesting things that I'm roping into the possible signs category are:

From June 09 - March 10 I was hospitalized 4 times. 1st was a heart problem they believe activated by pregnancy hormones, then c-section (only good trip to the hospital), 2/10 was pneumonia & 3wks later broke my leg followed by surgery. Each time that I was hospitalized & they checked all my levels I was always low in potassium & magnesium.

In dealing with my orthopedic surgeon & talking about all my falling he decided to check my vit D. He said low levels of vit D can cause balance problems. Depending on what is considered a normal range I wasn't severely low but I was at 30. He wants me at 60. So he started me on 50,000 units a week. A month later I had only come up to 32 so he decided to raise it to 100,000 units a week. My last test it was up to 44.

My husband & I tried to get pregnant for 3 yrs before we finally succeeded. I wrote that off to having been on birth control for so long (that's how the doctors tried to treat my migraines). In July we decided to start trying again & then I started having problems there. My ob is trying to deal with that by putting me on birth control for 2 months & then planning to give me clomid once I finish the birth control.

The last time I visited my ortho my balance was still so bad that on top of the vit D test he had a thyroid & testosterone check (not sure the relation there). My testosterone was high & he sent me a prescription for a thyroid medication. I've shown the test results to my ob & primary & each doctor seems to say different things about my thyroid. One says it was slightly low & another says normal so I'm not too sure what to believe on that. The majority seems to think that I should take the medication for the 30 days & get re-tested so I've been taking it.

I realize that these could all just be unrelated issues but from what I've read they all seem to fit with celiac disease. When I went on Monday to get tested they were also doing a full metabolic panel & some other tests on me to check out all the cowboys & indians basically.

I'm pretty freaked out about the gluten-free diet but I'm at that point where enough is enough. I need an answer. I want to feel better, I want to be better. This is really major for me (I see that a lot of celiacs here seem to have various food allergies so I don't mean to seem insensitive) because I'm a pretty picky eater. I mainly eat chicken, rice & breads. Luckily my mom likes to cook & since it was her idea, is being very supportive right now. My grandparents live with my parents right now & my grandma watches my son so we end up eating dinner with them most of the week. The last 2 days my mom has been trying to fix a gluten free dinner for me. For the most part I've cut the gluten out the last 3 days. We've messed up on the hidden gluten by not reading the labels of everything right away but it's been fairly minor things.

On that note I actually had a question. It has seemed like some people react from just the slightest trace of gluten. I was wondering if starting the diet if you would notice a positive difference even with very small amounts of gluten? For example the marinade my mom made yesterday actually had gluten in the bbq sauce she used. I have been feeling better the last two days & haven't been having any major stomach symptoms like before but I have had fairly good days before & then end up miserable a few days later.

How soon after going gluten free do people usually notice a significant difference?

Sorry for the long post. I am a long winded person but I've got a lot on my mind & to vent about too. Thank you to everyone who reads or responds to my post. I appreciate your time & input. I've been learning more & more reading through various threads. I'm so glad that there seems to be such a great, big, supportive community out there. I'm not sure I could do this alone

[mushroom]

Hi, Laennie, and welcome to the board. It sounds like you have probably ended up in the right place

Practically everything you describe in your post could be related to celiac disease and I am glad they are testing you for it. The ataxia (falling often, lack of balance) is a very common neurological symptom of celiac. Migraines and anxiety are also common. It sounds like most of your symptoms were neurological until after the birth of your son. (Childbirth, by the way, often acts as another celiac trigger.) Your GI symptoms were then passed off as IBS which a lot of us here can relate to.

Nutritional deficiencies (potassium, magnesium and Vit.D (which, by the way, I would call severely low) you mention) are also a feature of celiac disease. You may well have others - Vits. A, E and K, folic acid, and you should have your zinc and ferritin (iron) levels checked. You probably also should have your thryoid function checked too.

By the way, infertility and/or inability to carry a child to term is also associated with celiac disease, so I would be very surprised if your tests are negative, and would be surprised if your fertility problems did not clear up on a gluten free diet. On the other hand, be prepared that there is a 20% (approx.) false negative rate in the testing, even on biopsy, so just because your results are negative does not mean you do not have a problem with gluten. If you are sure you don't want the biopsy there is no harm in going gluten free right away, but do be aware that if you change your mind you will have to go back to gluten eating for some time and it may end up being worse for you than it was before. But even if all testing is negative, with your symptoms you should give the gluten-free diet a strict three-month trial.

No, you can't just eliminate most of the gluten - it's not like cutting down on cigarette smoking - it's an all-or-nothing proposition. You have to completely rid your system of it before you will stop making the antibodies and doing damage to your body. This means you will have to become an expert label reader - a little bit can hurt you! You may react differently at different times, but just because you don't notice an immediate reaction does not mean that harm is not being done. For example, you have had so many fractures for such a young person - I would recommend that you get a DEXA scan to measure your bone density because it sounds (with your low Vit.D as well) that you may be well on your way to osteoporosis. Celiac is an insidious disease and can cause so many other problems and autoimmune diseases; it is such a shame that doctors do not think to test for it sooner. So many times the patient realizes that they have it before the doctors do

Rate of recovery after gluten free varies with the individual, and sometimes depends on how long you have had the symptoms and how severe they are, so you cannot extrapolate from anyone else's experience. You are unique and will heal in your own good time. But you should notice a significant improvement in the GI issues quite soon. The neurological issues will take longer to resolve and make an impact on your symptoms.

Good luck on your gluten free journey and ask any questions you need answered.

[Laennie]

No, you can't just eliminate most of the gluten - it's not like cutting down on cigarette smoking - it's an all-or-nothing proposition. You have to completely rid your system of it before you will stop making the antibodies and doing damage to your body. This means you will have to become an expert label reader - a little bit can hurt you! You may react differently at different times, but just because you don't notice an immediate reaction does not mean that harm is not being done. For example, you have had so many fractures for such a young person - I would recommend that you get a DEXA scan to measure your bone density because it sounds (with your low Vit.D as well) that you may be well on your way to osteoporosis. Celiac is an insidious disease and can cause so many other problems and autoimmune diseases; it is such a shame that doctors do not think to test for it sooner. So many times the patient realizes that they have it before the doctors do

Rate of recovery after gluten free varies with the individual, and sometimes depends on how long you have had the symptoms and how severe they are, so you cannot extrapolate from anyone else's experience. You are unique and will heal in your own good time. But you should notice a significant improvement in the GI issues quite soon. The neurological issues will take longer to resolve and make an impact on your symptoms.

Thanks for your input. From what I had read it sounded like it might all be related. Glad to know that I'm just trying to make a connection where there may be none. Along with the initial vit D test that my ortho had done he also sent me for a bone density scan. I didn't actually see the results but they told me they came back normal & I don't have osteoporosis. I have learned just recently to get copies of my results because with so much going on I think my different doctors need to be kept in the loop. I'll be getting a copy of the results from all my blood work when it comes in.

Obviously I would love to feel 100% better but right now I would settle for the GI problems being less. They are what plague me the most. Now that I'm actually able to walk again it's a bit easier to deal with but it was sooo horrible for the 6 months I was in a wheelchair. I will continue to try & do better at label reading, my mom is as well, and I'm sure we'll make more mistakes but the plan is to go 100% gluten free. I was reading on another thread that 3 months seems to be the suggested time period to test it so if the test is negative that's my plan. I'm only thinking to skip the biopsy because I'm tired of dealing with insurance, referrals & new doctors lol. It's always a disaster for me.

Thanks again. Really appreciate the input & answers to my questions