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Not Sure If I Have Celiac'S

bpchick

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bpchick Rookie
bpchick
Posted

I'm hoping that folks on this forum might have some answers or suggestions for me that I haven't been able to get from my doctor. First, let me take a little time to just share my symptoms and what has been done so far.

About 7 years ago, after multiple episodes of horrible shooting pains in my abdomen, I had an upper GI exam done and was diagnosed with gastritis. I was put on Nexium, 20mg/day. I did not have the symptoms very often, and therefore was not good about taking the Nexium.

1) Within the last 6 months (since last summer), I have had more symptoms such as--nausea and vomiting for what appears to be no specific reason (not the flu, and doesn't appear to be food poisoning)--this has happened about 3 times in the past 6 months.

2) I have had the shooting pains on my abdomen again, and now they seem to be alleviated after extreme diarrhea for about 15 minutes until everything is out of my stomach. The only correlation I can seem to place with those shooting pains is high acid and/or high fiber foods. I have had issues after eating tomato soup or tomato sauce and anything that has added fiber to it (such as some of the Progresso Soups or the fiber bars).

3) Within the last couple of months I have had issues with stomach discomfort which sometimes turns into nausea if I do not eat at regular times each day. I used to be able to not eat breakfast, but that is not the case anymore--my stomach acids feel like they are eating my stomach away. If I even eat just a couple of crackers, my stomach seems to settle and I'm fine for a little while.

With all this extra issues, I started taking the Nexium more regularly about 6 months ago, and it seems to keep things mostly under control (except for the issues listed above). About a month ago I ran out of my Nexium and decided to hold off renewing the Rx because I was getting ready to go see my regular doctor and maybe they would prescribe sonmething else instead. But I couldn't do it after missing the Nexium for about 3 days--the pain was too horrible, the diarrhea was there.

My regular doctor advised me to see a GI specialist and last week I had both an endoscopy and an colonoscopy (I have a history of colon cancer in my family). I have to drive 1.5 hours to get to the GI specialist, so it's kind of a big deal to do it. The visual results that came back showed nothing was wrong. I thought I might have an ulcer, but I did not. The pathology reports that came back, my doctor said showed elevated levels of intra epithelial lymphocytes... which he said is a possible indicator of Celiac Disease. He said however, that from his estimations from the biopsies, that he thinks there is a 10% chance or less that I have that.

Basically, it seems that he doesn't really know what it is (which is often the case from what I can tell with these things). From what I have seen and read, there are blood tests that can help tell if you have Celiac Disase, right? He said that the intestinal biopsy is the "gold standard" for testing for Celiac and that doing blood tests will not show any more accurate information than the biopsy.

He said that basically we need to do a series of "eliminations" to see what might work. He wants me to go gluten-free for a full week (like 10 days), to see if I have any changes. I am doing that. I honestly can't imagine that I would see immediately results in the just that short amount of time. Would I? From what I have read it can take a minimum of 3 weeks before you see any results.

He said if this doesn't make any changes, then the next step is to do galbladder ultrasounds to see if it's that.

I already have one auto immune deficiency disorder (psoriasis) and reading more about Celiac's I kind of feel like it's possible that I might have it, but of course don't know.

What is your suggestion--should I ask to have blood tests done? should I ask to stay on gluten free for a minimum of 3 weeks first? Should I just go with what he advises?

Thanks!

Andrea

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starrytrekchic Apprentice
starrytrekchic
Posted

The biopsies can be hit or miss. Since the damage can be patchy, the doctor may have just taken samples from sections that were healthy; however, it's equally possible something else could be the problem.

I'm glad you mentioned the gallbladder--I was going to suggest that. I understand gallbladder problems happen more with spicy and rich foods; on the other hand, I have gallstones that give me no problems at all. Either way, you should have it checked. Is your pain on a particular side? Did the doctor test for Crohn's and Ulcerative Colitis during the colonoscopy?

Have your doctor run a full celiac blood panel. You'll have to be eating gluten in the weeks before it's ran, however; otherwise your results can be skewed. You also may want to consider an allergy test.

After the blood panel, I'd start an elimination diet. Since more than one thing might be the culprit, it's better to eliminate all the common allergens at once, then slowly add them back in one at a time.

As to the results--I felt better in 2 1/2 days; however, the months afterward were very up and down.

NE Mom Apprentice
NE Mom
Posted

You should start a food and symptom journal. Dairy is also a big allergen for a lot of people. You might try eliminating that while you wait for the celiac test to be done.

bpchick Rookie
bpchick
Posted
  • Author

You should start a food and symptom journal. Dairy is also a big allergen for a lot of people. You might try eliminating that while you wait for the celiac test to be done.

So is everyone suggesting that I do need to have the blood tests done because my doctor says no, it's not necessary and won't tell anything else that the biopsy wouldn't. Should I demand to have them done? After paying for the colonoscopy and the endoscopy, all of my medical expenses will be covered 100% so the high cost of the blood tests don't worry me.

I have been been going gluten-free for 3 days now already, at his advice. I will check in with him next week to follow up on the gluten-free test. At that point, I should go back on gluten to see how it goes before I have the blood tests, I understand, or it will be skewed.

  • 1 month later...
bpchick Rookie
bpchick
Posted
  • Author

So is everyone suggesting that I do need to have the blood tests done because my doctor says no, it's not necessary and won't tell anything else that the biopsy wouldn't. Should I demand to have them done? After paying for the colonoscopy and the endoscopy, all of my medical expenses will be covered 100% so the high cost of the blood tests don't worry me.

I have been been going gluten-free for 3 days now already, at his advice. I will check in with him next week to follow up on the gluten-free test. At that point, I should go back on gluten to see how it goes before I have the blood tests, I understand, or it will be skewed.

bpchick Rookie
bpchick
Posted
  • Author

Here's an update for me, but still nothing resolved. I have been gluten-free for more than 6 weeks now. To date, my one symptom of having the nausea if I don't eat timely 3 meals/day, has gone away. However, I have still had a few episodes with some food. I went today to have food allergy testing done, and the results showed absolutely no food allergies.

However, I have had a few episodes after eating--one was a baked potato (I ate the skin) with sour cream and butter. The other was after taking some EMERGEN-C vitamin drink one morning (on an empty stomach). I still seem to have some issues with acidic foods and high fiber foods.

Does anyone have any suggestions--should I be considering Irritable Bowel Syndrome?

Is it possible to have a slight case of celiac disease?

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