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Lot Of Questions

kimy

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kimy Rookie
kimy
Posted

I have lots of quesitons about Celiac Disease and was hoping that you more experienced people would be able to help me.

I have been having a lot of issues since 2008 after the birth of my son. I have joint pain, constipation, chronic fatigue, bloating, headaches daily, low vitamin D levels, 6 miscarriages, all four kids were 4 and 5 weeks premature, low vitamin D levels, and sever abdominal cramping. I also have antiphospolipid (sp), which is an autoimmune disorder. I had endoscopy in 2010 and was told I did not have celiac. I still don't feel any better.

I went to a new doctor last week, (had to find new dr because of move) and I was telling her all of these symptoms. She did all kinds of bloodwork such as my Thyroid, Liver, CBC, vitamin D and B levels. In the office I asked her to do bloodwork for celiac and she said she would have to research what blood tests but in the meantime just go on a celiac diet and see if it helps. I know from research that you can't do that and then later get bloodwork done. So, my first question is how bad is it to self-diagnosis? Do your really have to have a diagnostic diagnosis?

I decided to just go on the diet last Saturday and see what happens. I have not had bloating, cramping, or constipation since. I am going to the bathroom every other day instead of every 5 days. I used to eat and stand up from the table and look 4 months pregnant I was so bloated. I don't have that now. I have noticed that my joint pain is a little better, but not completely gone, I am still having headaches, and I am a little tired but not as bad as I was. The nurse called yesterday and said all my bloodwork came back okay except my vitamin D level was a 16 and she called me in supplements. Can I take supplements and they absorb if I am not eating gluten? Also I read somewhere that there is a supplement you can get for fatigue while healing if anyone knows what that is I would appreciate it.

Sorry for the long post, just lots of quesitons.

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mommida Enthusiast
mommida
Posted

Well you probably don't want to do a gluten challenge to continue with testing.

After your gut heals you start to absorb things better. It seems most have to readjust medicine and vitamin levels. ;)

Welcome to the board!

mushroom Proficient
mushroom
Posted

How much vitamin D did she order and how often are you supposed to take it? The way my (new) rheumatologist explained it to me, when your level is that low, you first have to fill up the tank (because you are basically just running on fumes in the gas tank :lol: ) So to fill up the tank you have to take big doses to start with until you get to a decent level and then revert to a maintenance dose. I was started at 50,000 iu every day for a week, then once a week until my levels tested normal (i.e. mid-range) and then dropped to 50,000 iu once a month. In between I take some 400 iu's several days a week. My levels are holding. But if you just start with 400 iu once a day, on an empty tank, you are barely taking enough gasoline to get you to the next gas station, and thus making no progress :D As mommida says, onece you start absorbing things better you can often cut back the doseages of many supplements/meds that you take.

Most people feel better when their levels are mid-range, and since D is such an important nutrient in bone building it is crucial to keep this level up or you run the risk of osteoporosis.

Your celiac blood work can be negative and you can still be celiac (20% error rate) or the testing may be accurate and you are non-celiac gluten intolerant. Either way, you are gluten free from now on. And either way you could be deficient in Vitamin D and other nutrients.

Whether or not you wish to pursue a biopsy (it is possible to be celiac positive on biopsy and negative on blood work) or just go gluten free because the treatment is the same, is up to you. Some people need the certainty of a diagnosis; others can live with just knowing they can't eat gluten. :)

frieze Community Regular
frieze
Posted

If they are calling in a script, in all likelyhood you will get D2, not D3. better to go to the vitamin aisle and pick up a large bottle of D3. More user friendly for the human body.

burdee Enthusiast
burdee
Posted

I have lots of quesitons about Celiac Disease and was hoping that you more experienced people would be able to help me.

I have been having a lot of issues since 2008 after the birth of my son. I have joint pain, constipation, chronic fatigue, bloating, headaches daily, low vitamin D levels, 6 miscarriages, all four kids were 4 and 5 weeks premature, low vitamin D levels, and sever abdominal cramping. I also have antiphospolipid (sp), which is an autoimmune disorder. I had endoscopy in 2010 and was told I did not have celiac. I still don't feel any better.

I went to a new doctor last week, (had to find new dr because of move) and I was telling her all of these symptoms. She did all kinds of bloodwork such as my Thyroid, Liver, CBC, vitamin D and B levels. In the office I asked her to do bloodwork for celiac and she said she would have to research what blood tests but in the meantime just go on a celiac diet and see if it helps. I know from research that you can't do that and then later get bloodwork done. So, my first question is how bad is it to self-diagnosis? Do your really have to have a diagnostic diagnosis?

I decided to just go on the diet last Saturday and see what happens. I have not had bloating, cramping, or constipation since. I am going to the bathroom every other day instead of every 5 days. I used to eat and stand up from the table and look 4 months pregnant I was so bloated. I don't have that now. I have noticed that my joint pain is a little better, but not completely gone, I am still having headaches, and I am a little tired but not as bad as I was. The nurse called yesterday and said all my bloodwork came back okay except my vitamin D level was a 16 and she called me in supplements. Can I take supplements and they absorb if I am not eating gluten? Also I read somewhere that there is a supplement you can get for fatigue while healing if anyone knows what that is I would appreciate it.

Sorry for the long post, just lots of quesitons.

I self-diagnosed after years of misdiagnoses and then did the Enterolab stool test panel, which indicated lots of gluten inteolerance and celiac markers. Several doctors later accepted those results along with my chronic symptoms as celiac disease. I didn't have to return to eating gluten in order to take Enterolab stool tests. So never did return to eating gluten just to get sick enough to satisfy traditional docs rather insensitive blood and endoscopy tests. If you take responsibility for your own health (which you seem to be already), you obviously don't need a doctor to tell you what you already know.

However, I want to ask: What were your thyroid test results? Did your doc test TSH, free t4, free t3 and (most important for celiacs) thyroid antibodies (TPOab)?? What were those results? Chronic constipation is often a symptom of hypothyroidism, which can be caused by Hashimoto's thyroiditis (an autoimmune thyroid disorder which is highly correlated with if not caused by gluten intolerance).

kimy Rookie
kimy
Posted
  • Author

Thank you very much for the replies. I know that I have to take the vitamin D for one week everyday and then one once a week for eight weeks and she will retest it. As far as my TSH all they told me was it was normal. I have not received the labs as of yet, but when the nurse called me and told me my results I had asked her what my vitamin D was suppose to be and she didn't know. I told her I believed it was to be above 30 and she said oh okay maybe you should come work for us.

Is there something I can take to help with the fatigue while my body is healing? It is somewhat better, but I think it is of course not 100% yet.

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