My Story

[kmwondering]

I've made a couple of posts here with specific questions about testing, I thought I would take a minute to tell the whole story here, if for no other reason than to vent. Certainly appreciate all the help I've gotten here so far. I gave birth to my second child one year ago (at age 32) and six weeks later, Ianded in the hospital with what turned out to be symptomatic gallstones. Gallbladder removed and follow up with the GI found that my liver enzymes keep fluctuating in and slightly out of the normal range, which has prompted much more testing. Normal ultrasound, normal mrcp, normal endoscopic ultrasound tend to rule out an obvious physical cause. I take no medication and no alcohol and don't have diabetes. Blood testing has found no evidence of hepatitis, wilson's, hemochromatosis, or autoimmune liver disease and has, thus far, found no celiac, but I'm thinking the celiac portion of testing might just be incomplete. I detailed that in another post. I have normal IGA and negative ttg-iga and dgp-iga but no other tests were done.

The more I read about celiac, the more it seems to fit lots of things that seemed unrelated. Lifelong history of migraines, low bmi despite the ingestion of large quantities of food, low cholesterol, low blood pressure, not anemic but always in the low range, easily dropped potassium, "IBS" for my entire adult life that can be quite horrible at times (colonoscopy found no large bowel problems), gas, bloating, tooth enamel problems, bouts of debilitating anxiety that seems to mirror, symptom for symptom, magnesium deficiency. Never had the mag tested when in one of those phases but have had it tested at other times and it is always absolute bottom normal range and taking Mg supplements decreases my day to day anxiety and heart palpitations....I think that's all

I'm in an insurance hole right now and only have catastrophic coverage so I'm at a standstill in the testing that started last year. I'm hoping that my GI will be open to exploring the diagnosis of celiac more thoroughly when I am able to have all the testing covered. I will definitely do a gluten free trial either way, but I'd like a positive diagnosis in hand if I do have Celiac. I think it will be easier to convince doctors to monitor my children and it will be the only way I would convince some family members to get tested as well. Thanks for reading

[eatmeat4good]

I think you are on to something with your list of symptoms.

Don't be surprised if your family doesn't get tested even if you get diagnosed with it.

Seems pretty common around here. My family is the same.

And even though I am diagnosed the Dr. doesn't want to test my son. It makes no sense at all. So we saw another Dr. and they said what symptoms does he have? Well, you and I know that Celiac can be symptom free. But I said he has leg aches and asthma and depression. Those are not celiac symptoms I was told. Luckily my son agreed to trial gluten free and all his symptoms went away. We decided a Dr. didn't have to tell us that he was Celiac...we already know. For what it is worth, vitamin D deficiency can cause asthma-like symptoms so that may have been it. But it doesn't excuse the years of prednisone, inhalers, and anti-biotics. Just saying....sometimes you have to make your own decision. I hope you get your testing and diagnosis, but even if you don't...don't give up on gluten free. Might be best for you and the kids regardless of what Doc says.

[kmwondering]

I think you are on to something with your list of symptoms.

Don't be surprised if your family doesn't get tested even if you get diagnosed with it.

Seems pretty common around here. My family is the same.

And even though I am diagnosed the Dr. doesn't want to test my son. It makes no sense at all. So we saw another Dr. and they said what symptoms does he have? Well, you and I know that Celiac can be symptom free. But I said he has leg aches and asthma and depression. Those are not celiac symptoms I was told. Luckily my son agreed to trial gluten free and all his symptoms went away. We decided a Dr. didn't have to tell us that he was Celiac...we already know. For what it is worth, vitamin D deficiency can cause asthma-like symptoms so that may have been it. But it doesn't excuse the years of prednisone, inhalers, and anti-biotics. Just saying....sometimes you have to make your own decision. I hope you get your testing and diagnosis, but even if you don't...don't give up on gluten free. Might be best for you and the kids regardless of what Doc says.

Thanks for your response. I'm glad that gluten free helped our son. You are right, I don't need a diagnosis to go down this path and I'm going to give it a shot regardless. Can't hurt

[eatmeat4good]

I hope it will help you as much as it helped us. Good luck to you! I hope you will post back on how you do!