Mixed blood test results?

[llamalulu]

Hello!

 

I have two questions. I have been feeling bad with stomach symptoms for a while. I also have bad migraines. The doctor was planning to do an endoscopy anyway because I've been losing lots of weight and having constant nausea and intermittent stomach pain whenever I try to eat. Now he's going to biopsy. On the blood tests, of the four markers, only one was positive, so I guess my first question is, is it even possible I could really have celiac? The one that was positive was gliadin AB DEAMD IgG and it was 39. I guess I don't understand how I could get one marker high and the others all fine if it's really celiac?

 

The second question is that I've read in responses to other people that you're supposed to eat a slice of wheat bread leading up to both the blood test and the endoscopy. I don't think we have any whole wheat flour on hand. We do have white flour and I've made some muffins which I've been forcing myself to eat. Will that work? I would like them to get an accurate reading obviously. Or does "wheat bread" on this site just mean "non gluten free bread?" Thank you.

[GFinDC]

Hi,

Yes, you can have celiac disease with only one gliaden antibody active.  It only takes one type of antibody to do damage.

The regular white flour you get in a grocery store is wheat flour.  They bleach the flour to make it white and get rid of all the pesky natural vitamins.  You can check the ingredients list to verify this info.

Eating some gluten every day for 2 weeks is needed before the biopsy.  It takes 12 weeks of eating some gluten daily got the blood antibody tests.  You can read up on doing a gluten challenge for more info.

Edited February 5, 2021 by GFinDC

[trents]

Yes, wheat flour doesn't have to be whole grain flour to have all the gluten. Less fiber but just as much gluten.

[llamalulu]

Okay, excellent, because I feel absolutely awful and was hoping project death muffin hadn't been in vain. I guess I only read here that I had to be sure to eat gluten daily 9 days before procedure. I think I probably had some gluten on days 11 and 12. I haven't been eating very much TBH because I've been so nauseated all the time. I hope they still get an accurate result either way. 

[trents]

1 hour ago, llamalulu said:

Okay, excellent, because I feel absolutely awful and was hoping project death muffin hadn't been in vain. I guess I only read here that I had to be sure to eat gluten daily 9 days before procedure. I think I probably had some gluten on days 11 and 12. I haven't been eating very much TBH because I've been so nauseated all the time. I hope they still get an accurate result either way. 

That's a little confusing in light of the discussion of whole wheat flour vs. white wheat flour. Have you been eating something made of some kind of wheat flour daily for the couple of weeks leading up to the planned endoscopy/biopsy?

[llamalulu]

25 minutes ago, trents said:

That's a little confusing in light of the discussion of whole wheat flour vs. white wheat flour. Have you been eating something made of some kind of wheat flour daily for the couple of weeks leading up to the planned endoscopy/biopsy?

My procedure is scheduled for next week. When I learned I needed to eat wheat flour daily leading up to it (9 days pre-procedure) I immediately started eating wheat flour containing foods daily. But because I have been feeling wretched and nauseated and skipping lots of meals I am not sure that I ate gluten on the 5 days before that (I think it said you needed to eat gluten for 14 days pre procedure.) I remember having waffles on days 11 and 12 pre-procedure. I remember getting very sick after eating pasta several days before that but not sure if it was in the two-week window. I'm hoping this will be enough gluten.

[trents]

Be sure to mention these circumstances to the doctor doing the endoscopy.

[Scott Adams]

Hi @llamalulu and welcome to the forum!

If you could share your blood test results with us, including the scale that is used to mark a positive result (they vary from lab to lab), it would provide more information. I ask because you mentioned that you only had one positive result, but perhaps the other tests were elevated also, just not high enough to classify you as having celiac disease, but the fact that they also might be elevated may not be normal.

Let us know how the biopsy turns out, and it sounds like you've been eating enough gluten to get accurate biopsy results--hopefully they will take at least 4 samples, which is the current recommendation.

[llamalulu]

1 hour ago, Scott Adams said:

Hi @llamalulu and welcome to the forum!

If you could share your blood test results with us, including the scale that is used to mark a positive result (they vary from lab to lab), it would provide more information. I ask because you mentioned that you only had one positive result, but perhaps the other tests were elevated also, just not high enough to classify you as having celiac disease, but the fact that they also might be elevated may not be normal.

Let us know how the biopsy turns out, and it sounds like you've been eating enough gluten to get accurate biopsy results--hopefully they will take at least 4 samples, which is the current recommendation.

The other tests all said less than 1. So like nothing. Which was what made me feel like if it was really celiac why wouldn't the other things show any sort of reading? Seems like if that was going on there would be something? But then I feel sick every time I eat. So I dunno. I have the biopsy next week. I will continue eating the gluten. 

[Scott Adams]

If you can get a copy of your results from your doctor it might be helpful. Sometimes those "negative" results aren't so negative. This disease isn't always black and white, and there is a lot of grey in there!

[llamalulu]

I had my endoscopy. They said my stomach was inflamed. Polyp in stomach. They took biopsies plus the small intestine biopsy. They said it will take about a week for the results. The doctor said to stop eating gluten. I guess we'll know more in a week.

[llamalulu]

So my biopsies came back negative. Doctor said to stop gluten for two weeks and see if I felt better off of it. Is two weeks a long enough trial to know whether or not gluten is the issue?

[trents]

Two weeks might allow you to start feeling somewhat better but I would give it more time. The trouble is, most people who start on the gluten free journey have no idea how gluten is disguised by terminology in the food industry and how ubiquitous it is. It shows up in foods that you would never, never suspect to find it in like canned tomato soup (actually, it's in most all canned soups, really) soy sauce and even chocolate syrup. There is no way you are going to compress that learning curve into two weeks. Several recent studies show that most people attempting to eat gluten free are actually practicing lower gluten eating because they are not aware of how gluten is hidden in processed foods and they are not aware of cross contamination issues. This is particularly true of those still dining out.

[llamalulu]

Yes, I am feeling quite overwhelmed by the amount of information out there detailing what one must do to go gluten free. We do not eat out or eat processed foods because my food restrictions due to severe migraine are so restrictive. We cook everything from scratch. 

 

Still, I am daunted by seeing things like that a product was not tested for gluten content but the only two ingredients are beans and salt... so can I trust that? Or my toothpaste... the website states there are no known wheat containing ingredients, but they do not do gluten testing. I checked all my medications. Then there are all the foods that have no wheat containing ingredients but the label warns they are processed in a facility with wheat. Oats apparently aren't safe. It feels like between this and the list of foods I already can't eat because of migraine it's hard to find things that are actually safe to eat.

[Scott Adams]

Good questions. I don't think it's fair to make all food manufactures include "gluten-free" on a label that is for a food that is obviously gluten-free, but I do think all manufacturers need to have allergen protocols in place, and declare any allergens on their labels. Personally I include many things in my diet, including canned refried beans, which are not labelled gluten-free. I did buy a Nima Sensor and have run tests on things that I eat regularly that aren't labelled gluten-free.  

[Beverage]

On the migranes...I have a friend who has complete alopecia (no hair), and since that was triggered when she was a teenager, she has had very bad migranes. Her doc recently recommended magnesium supplements, and that really helped. She still gets migranes, but not nearly as often or severe.  For you, a magnesium deficiency could be related to not absorbing nutrients due to Celiac's.  Do an internet search and a search in here on magnesium, if there is a better form of it than others.  In my journey, I have found that the form of the vitamin can make a tremendous difference in absorbtion.

[trents]

Magnesium Glycinate is very popular. Well-absorbed and therefore doesn't cause as much laxative effect.

[llamalulu]

I do take magnesium already as per my neurologist for the migraines. And I do take Magnesium Glycinate (gluten free.) 

I feel like whether or not wheat is an issue, I definitely have gastritis/stomach irritation still happening maybe half the time I eat even though I haven't had any gluten for almost a month. Is that something where it should have been expected to get better by now? I have been having a lot of oatmeal because I'm still losing so much weight and I have to eat something... but I guess I've read people saying oats can be a problem for some.