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My Story

kmwondering

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kmwondering Rookie
kmwondering
Posted

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 :)

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eatmeat4good Enthusiast
eatmeat4good
Posted

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 Rookie
kmwondering
Posted
  • Author

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 Enthusiast
eatmeat4good
Posted

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!

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    • trents
      how much gluten do I need to eat before blood tests?

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      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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