How Important Is Full Celiac Panel Blood Test?

[floridanative]

I am looking for help regarding getting a proper diagnosis for whatever is wrong with me. I had unexplained anemia but some antibody level was way too high so the GI doc said that explains why my iron stores are so low (after taking tons if it for 8 weeks) but he said we'd have to see why the antibody level was so high. He mentioned celiac disease and then scheduled me for a colonoscopy to look for more serious problems first (and to follow insurance protocol). So he finds nothing except that I have diverticulosis (can cause mild bloating and stomach cramps) and he tells me to eat more fiber. I already eat a ton of fiber but didn't when I was younger so I'm sure that's when the damage occured.

Okay, so this diagnosis could explain why I have the occasional intestinal problems but it doesn't explain the anemia. So now they want to schedule a biopsy to check for celiac disease. Well I realize this test is necessary to confirm celiac disease but shouldn't I have a full Celiac panel blood test done first to see what that shows? I don't have enough folic acid in my system and sometimes this causes iron deficient anemia in people. If that happened with me, then I could take an rx folic acid which is what my reg. doc told me to do when she called with the homocystene level results. Anyone out there have any suggestions as to what my next step in testing should be? I guess I don't want to get myself into a situation where my blood work doesn't support the GI's suspicion since then he may refuse to do the biopsy. And of course if I do have celiac disease I need to know so I can begrudgingly start the gluten-free diet asap. Any help is greatly appreciated.

Thanks in advance for your help!

Tiffany M.

[kolney]

I am looking for help regarding getting a proper diagnosis for whatever is wrong with me. I had unexplained anemia but some antibody level was way too high so the GI doc said that explains why my iron stores are so low (after taking tons if it for 8 weeks) but he said we'd have to see why the antibody level was so high. He mentioned celiac disease and then scheduled me for a colonoscopy to look for more serious problems first (and to follow insurance protocol). So he finds nothing except that I have diverticulosis (can cause mild bloating and stomach cramps) and he tells me to eat more fiber. I already eat a ton of fiber but didn't when I was younger so I'm sure that's when the damage occured.

Okay, so this diagnosis could explain why I have the occasional intestinal problems but it doesn't explain the anemia. So  now they want to schedule a biopsy to check for celiac disease. Well I realize this test is necessary to confirm celiac disease but shouldn't I have a full Celiac panel blood test done first to see what that shows? I don't have enough folic acid in my system and sometimes this causes iron deficient anemia in people. If that happened with me, then I could take an rx folic acid which is what my reg. doc told me to do when she called with the homocystene level results. Anyone out there have any suggestions as to what my next step in testing should be? I guess I don't want to get myself into a situation where my blood work doesn't support the GI's suspicion since then he may refuse to do the biopsy. And of course if I do have celiac disease I need to know so I can begrudgingly start the gluten-free diet asap. Any help is greatly appreciated.

Thanks in advance for your help!

Tiffany M.

<{POST_SNAPBACK}>

[kolney]

The blood work is not conclusive, but the biopsy is. Go with the biopsy first. The blood work can confirm the biopsy if your doctor still wants to do that. I would so you have starting numbers with which to compare future blood tests. Being gluten free isn't that bad. I've been at it since September 03. I like to cook and bake so that is to my advantage. Health food stores and on line stores make gluten-free foods readily available. Do your homework and you'll be fine if you have celiac disease. Good luck.

Kathryn

Zeeland, MI

[floridanative]

Thanks Kathryn - I have already been to a gluten-free food seminar since it was the last one for a while and figured it wouldn't hurt to go and find out all I could for free. I know that I will have lots of options of fine substitutes. My fear is that I will have a really hard time eating out (we do so often) and we travel to places we don't even speak the language so I can't even explain my needs correctly. Guess I can take a foreign guide card with me and hope for the best.

I'll schedule the biopsy this week and see what they find. Thanks for your post and encouragement.

Tiffany M.

[Nevadan]

Tiffany,

Sorry to muddy the waters; however, I also have anemia (and osteoporosis). I did the g/gluten-free diet challenge on my own and found some other gastro symptoms ( gas, bloat, constipation) went away within 48 hrs so I knew my body didn't really like gluten. After going gluten-free this past June I subsequently was tested by Enterolab who confirmed what I already had deteremined (I'm gluten sensitive) plus their DNA analysis found I have a pair of HLA-DQ1 genes which make me unlikely to have intestinal villi damage(no celiac disease) , but do make me susceptible to non-celiac disease gluten sensitivity which is related to some pretty bad diseases which I would rather not experience. I've done some research and found references indicating that people with this form of gluten sensitivity even without celiac disease (villi damage) can have nutrient metabolism problems. This could cause such things as vitamin/mineral deficiencies and the resulting anemia, osteo, etc. After 6 months of gluten-free diet I'm looking forward to rechecking my anemia with the hope that it has improved.

The bottom line is that even if you don't turn out to have celiac disease, you could still have non-celiac disease gluten sensitivity. Positive response to a gluten-free diet would confirm that. You might want to have DNA testing just to check your probabilities. DNA results don't confirm disease, but they do indicate what you might be suseptible to having.

Hope this helps.

George

[tarnalberry]

Standard protocol is blood work first (full panel) and then biopsy. The biopsy is currently considered the gold standard, though that may change. Frankly, I'd probably do both at the same time, but I don't know if your doctor would go with that.

[floridanative]

Thanks everyone. I think I will try and do both the biopsy and blood work on the same day if they let me.

George - did you take iron for your anemia and are you still? At this point I can't go but a week or so without iron pills and function normally. I'm thinking if I go on the gluten-free diet, I should stay on the iron for a couple of months and then go off them and see what happens. The worst symptom I have is the fatigue from the anemia. Any tips on staying on/going off iron?

Thanks!

Tiffany M.

[Nevadan]

George - did you take iron for your anemia and are you still?

Tiffany M.

<{POST_SNAPBACK}>

Tiffany,

My anemia is not too bad - My Red Blood Count (RBC) runs about 10% below the minimum of the "Acceptable" range. I'm not sure if this effects my energy levels since it's been this way forever. The only iron supplement I've ever taken is a multivitamin which has 30% of the Min Daily Requirement of iron. Several dr's had told me repeatedly not to worry about being 10% low since I had been that way so long and it wasn't getting worse - said it was probably "normal" for me - so much for dr's It wasn't until about May-June of this year when I learned about gluten sensitivtity that I began to suspect their recommendations. Since going gluten-free I would now like to see if there is any improvement in my RBC just due to diet alone; therefore, I'm delaying adding any other supplements until I reach the 6 month point and have my RBC checked again - just the scientist in me wanting to validate the gluten-free diet

Hope this makes sense.

George

[julie5914]

My iron got so bad before celiac was found that I could not walk around the block. I would be absolutely exhausted. And I used to run. I was started on iron pills then (around March) and started the gluten-free diet in June. I stopped taking iron pills sometime in May I think. My iron levels have not dropped. In fact they are higher than they have ever been. Get both blood work and endoscopy. It will make you and your doctor both happy. GI docs love to scope.

[VydorScope]

The blood work is not conclusive, but the biopsy is.

Ummmm, the biopsy is only conclusive IF its postive. If you get a negative result then, it only says "you probably dont have celiac disease, but you sitll might".

[Nevadan]

George - did you take iron for your anemia and are you still?

Tiffany M.

<{POST_SNAPBACK}>

Just a little more elaboration on my anemia situation. My mother had anemia all her life too and it got much worse as she got older and did not respond to supplements. My older brother also has anemia which has worsened as he got older - he also has osteoporosis as I do (and one of his sons). Based on this, our anemia and osteo are almost certainly genetic. There are several different genetic causes for anemia & osteo with gluten sensitivity being only one possibility; however since I have a double HLA-DQ1 gene pair, I know that both parents had at least one each so DQ1 is definitely in the family. To my thinking, the anemia/osteo/DQ1 combo along with some gastro & neuro symptoms that have gotten better with the gluten-free diet makes it more likely that gluten sensitivity is the root cause for most of these problems - I actually hope that is the case. Any improvement in my anemia will be just one more bit of evidence to support this.

P.S. Since the DQ1 gene(s) do not make villi damage probable, if I had an endoscopy it would probably turn out negative. The key fact is that endoscopy is mostly useful for detecting celiac disease("the tip of the iceberg"), but not necessarily for detecting non-celiac disease gluten sensitivity which can be just as serious health-wise. In my personal opinion, endoscopy is way overrated.

George

[floridanative]

Again - thanks everyone for your repsonses.

George your first post did make perfect sense and I'm thinking my doc may indeed say I can not have celiac disease or gluten intolerance if my biopsy is negative. If it is negative and my blood work is mostly positive (one test is for sure) then I guess the next step is going gluten-free and see where that takes me. If after being on the diet for say six months my blood work looks normal, guess that's all the proof I need to confirm I have to live gluten-free.

Tiffany M.