Confused For What To Do Next

[silverdawn]

Hi everybody,

I am glad to have found a forum like this. Anyways just got tested through enterolab and showed sensitivity.44 units.

I did this test because i've always had gi issues, like stomach cramps after certain meals, excessive gas and most recently ongoing constipation. In addition to stomach problems i have bipolar disorder and ADHD symptoms,( i

decide to do something and will be distracted and move onto something new.) I need you to help me.

I feel that i should start a gluten free diet ASAP, but my boyfriend believes i should consult with primary care

physician to get a blood test. When i first met with My primary physician and told him of my stomach issues

he recommended that i try a gluten-free diet for two weeks and see if i notice an improvement.I have read in these forums that blood tests aren't accurate. What would be the

downside of getting a blood test and confirming that i have gluten sensitvity? (Do these tests measure gluten sensitivity or will they only be positive if you are a true celiac?) I am afraid that i might be

diagnosed with celiac and my insurance won't be happy with that. I am already in a high risk pool because

of my diagnosis of bipolar and one insurance company would not cover me because i've had 13 urinary tract

infections in the past 3 years. I feel my intuition is telling me to just start a gluten free diet and not have

a blood test done, anyways it might be negative and i still would have symptoms. I feel that i don't have anything

to lose by going gluten free, gluten is not necessary in the diet to be healthy. But also there is the voice

in the back of my head telling me that i'm not sick and going gluten free would be a burden to other people.

For example my boyfriend's family loves to eat, lots of bread dishes and dessert, and if i refuse meals i think

they're going to feel resentment or that i'm weird for turning down food.

[Wolicki]

Hi Dawn

It is really going to be up to you. Blood tests can be false negative. Or, you could be gluten intolerant and not celiac. That will never show up in a blood test. The insurance issue might be your reason to not pursue further testing.

My thought is, if your blood tests are negative, will you still go gluten free? If your answer is yes, then why not just start the diet?

All of us have had some kind of issue with our loved ones understanding that food makes us sick. This is why you get to choose your friends, LOL Many folks here consider a diagnosis of gluten sensitivity from Enterolab to be a definitive diagnosis, but most doctors do not.

You really have nothing to lose by going gluten free. Good luck with whatever you choose.

[rachel-gf]

Hi Silverdawn,

Yes, it is up to you. But I would say if there's any chance you would ever want a definitive diagnosis of celiac, I would recommend getting a biopsy before you go gluten-free. Otherwise, you may never really know if you have it. I am now in this strange "is-it-celiac-or-isn't-it" state. From my perspective, if you're not ready to commit to a strict and permanent gluten-free diet now, you will want to consider a biopsy.

I would recommend using your local gluten-intolerance or celiac group to find a good doctor in your area. Then try to ask this person to give you proper blood tests and a biopsy ASAP. Then try to get an appointment with that doctor directly. If you need you, you can try your primary care doctor, but this route may take longer and they may not run all of the right tests. You may want to check with your insurance about which doctor visits and tests are covered, and if they need pre-authorization.

Good luck.

[Mrs. N]

Hi Dawn,

If it were me, knowing what I know now, I would start eliminating gluten and forget everyone else. My bloodwork and biopsy were negative. Thankfully, I have a doctor who could see that one of my tests was pretty high within the normal range and recommended I give gluten-free living a try for 6 months to see what happened. I went that route, and had actually gone that route a couple of days before the biopsy and had noticed a difference in that short amount of time. One very reliable test for those who are reacting to gluten is the elimination of it. Some people have celiac disease/GI and don't have symptoms, but the rest of us know how we feel with and without gluten.

All of that to say that you are justified in jumping in with both feet and seeing how you feel. Stick with it for several months, though, as sometimes we have so much damage that it takes a while to notice a difference.

[Roda]

There are probably some on here that are more knowledgable about this subject. I was looking on the internet one day about celiac and bipolar disorder (my husband's sister is dx and he has a family hx of depression and drug/alcohol addiction) and was wondering if there was a connection. Maybe someone on here can substansiate this or not. Here are some links for you:

Open Original Shared Link the comments too very interesting)

Open Original Shared Link

Open Original Shared Link

[nora-n]

Which Enterolab test showed 44 units?

Which tests did you have done?

If those are high, the ordinary blood tests might be positive too.

You see, Enterolab tests are designed to show up something much earlier than the ordinary tests, to catch it early.

the ordinary tests just look for serious gut damage from gluten, and by the time this has occured, people usually have lots of other issues. Some never get positive blood tests and biopsies, but have severe other issues from gluten, like nerve damage and brain damage, or gluten ataxia.

It might help re. family and in-laws to have some tests show up for gluten intolerance.

I have had no problems, though.

It is much healthier to not eat all that starch anyway.

[silverdawn]

Thank you all for replying and giving me great advice. I will do my best to stick with the gluten free diet for a couple of months and see how i start to feel.