I Have To Load Up On Gluten

[ANDOBEAR]

So I saw a specialist last Friday. He was not satisfied with the test performed by my regular GI since at that time we weren't really looking for Celiac. So another round of tests. He wants me to load up on gluten until next week when he will repeat the endoscopy (using the longer scope and taking many, many biopsies), repeat the blood test (through his lab which uses different standards), and do a colonoscopy for the first time. He is very worried about my iron deficiency, which I am having weekly iron infusions to correct. He wants me to load up on the gluten so he has a better chance of getting positive results. I suppose a week of gluten loading won't kill me. I just really want to get the answers to what is wrong. I know I carry the gene for celiac and my last biopsy was non-specific. Hopefully this will help get to the bottom of the issues. I don't know what the next step will be if these tests are negative. I'm getting frustrated.

[nikki-uk]

You don't say how long you've been gluten-free for?

If you have been gluten-free for any length of time one weeks worth of gluten eating is unlikely to change any bloods or biopsy results (a gluten challenge is usually at least 6-8 weeks).......but if it was only for a short time you are in with a chance.

Did you notice any relief of symptoms while gluten-free??

[nora-n]

The other posts are at

Open Original Shared Link where bood tests were negative but gene test showed double DQ2 of the variant that is on the same chain, now known as DQ2,5 and double that means 10x the risk for celiac.

and

the long post with the long history is at

Open Original Shared Link

27yo female with a family history of celiac in aunt and grandmother (on same side of family).

I have had chronic diarrhea and general GI troubles like bloating, pain, reflux, constant belching, my whole life. I was diagnosed as bein lactose intolerant as an infant so I always associated my issues with lactose. Since my youngest son was born 18 months ago my GI issues have become far worse. Lactose intolerance was RULED OUT after a breath test. I have also had issues with anemia and iron defficiency my whole life. These issues have also worsened recently. My extreme iron defficeincy and worsening reflux symptoms prompted a gastroscopy. The gastroscopy confirmed GERD and gastritis. The biopsy showed increased intraepithelial lymphocytes at the villous tip, suggestive of ciliac. The pathologist noted that clinical correlation was necassary. Based upon that, the NP at my GI ordered a celiac plus panel for Prometheus. The test shows that I carry the genes for celiac but the serology was negative. (I have not seen these results myself so I can't comment on the specific numbers. A copy is being mailed to me.) I was sure the results would be positive, since after reading up on celiac I have several symptoms I never knew were associated with the disease....since having my son I have been treated by a rhumetologist for joint pain and swelling, a chiropractor forback pain and tingling of the limbs, my GP for a rash that gets itchy at night, a councelor for depression, a bariatric surgeon and nutritionist for a 60 pound post partum weigth gain, a hematologist for iron and vitamin deficiency (supplements are not working and weekly iron infusions are necessary), and of course a GI specialist for the afformentioned issues. So what the hell is wrong with me if its not celiac disease? I have read studies that say the results of my biopsy are reason enought to diagnose celiac. I told the NP at the GI I wanted more testing to get to the root of the issues. She now wants stool samples and a colonoscopy because I refuse to hear that I must live with these symptoms with no explanation. Does this sound like celiac disease or something else? She said I could try the GFD once we are through with testing even if I don't get a diagnosis. Well, I want a diagnosis damnit.....of something. I want an explanation.....is that too much?

Yes, I suppose you are right. The reason I want a firm diagnosis is because I am having gastric bypass surgery done at the end on july. I want to be sure I am treating the right problems. I think I will give the diet a shot if nopthing else pops up as a possibility.

nora

[ANDOBEAR]

The other posts are at

Open Original Shared Link where bood tests were negative but gene test showed double DQ2 of the variant that is on the same chain, now known as DQ2,5 and double that means 10x the risk for celiac.

and

the long post with the long history is at

Open Original Shared Link

nora

I'm sorry was my post too long?, am I posting too much? I thought I could come here for questions and advice while I am going through this roller coaster of getting a diagnosis. Sorry if I'm invading the board.

[leadmeastray88]

I'm sorry was my post too long?, am I posting too much? I thought I could come here for questions and advice while I am going through this roller coaster of getting a diagnosis. Sorry if I'm invading the board.

No not at all!!

She was just giving refernce to your previous post so people who didn't see it can catch up

No worries!!

[ANDOBEAR]

No not at all!!

She was just giving refernce to your previous post so people who didn't see it can catch up

No worries!!

Oh ok. I suppose I should have included them myself. So thank you Nora, if you were trying to make it easier for people to get the big picture. I'm just cranky, frustrated, fatigued and done with being sick without an explanation.

[lizard00]

My doctor is pretty sure that my pregnancy is what triggered my celiac gene. Pregnancy is also known to be a common trigger... so, if your symptoms got worse after pregnancy, that is my educated guess.

You know, the diagnosis of Celiac is 3-part. Consuming gluten, testing positive w/blood and or biopsy, and positive response to the gluten-free diet. If your biopsy is inconclusive, try the diet. You already carry the gene, you've had the stressor to trigger it, and if you have positive response to the diet, you probably have it. If you feel better, who cares about a diagnosis. Now that I have one, I sort of regret it. While it validated me, I worry now about insurance down the road. Right now, I am on my husband's group plan, but what if something happened? How difficult would it be for me to get private insurance?

[ANDOBEAR]

My doctor is pretty sure that my pregnancy is what triggered my celiac gene. Pregnancy is also known to be a common trigger... so, if your symptoms got worse after pregnancy, that is my educated guess.

You know, the diagnosis of Celiac is 3-part. Consuming gluten, testing positive w/blood and or biopsy, and positive response to the gluten-free diet. If your biopsy is inconclusive, try the diet. You already carry the gene, you've had the stressor to trigger it, and if you have positive response to the diet, you probably have it. If you feel better, who cares about a diagnosis. Now that I have one, I sort of regret it. While it validated me, I worry now about insurance down the road. Right now, I am on my husband's group plan, but what if something happened? How difficult would it be for me to get private insurance?

Its not so much that I want a "Celiac" diagnosis. I just want someone to say "Oh yes, this is the problem. Now do this." Instead I'm getting a lot of "It may be this. We don't know, but you could try this." I just don't want to go on this diet and then in 3 months when/if I'm still suffering hear "Oh well we could start testing for this or that." I work in the medical field so I know it can be hard to give a pin-point diagnosis. I also know that the longer a problem goes undiagnosed the worse it can get and the treatment and complications can also become more difficult. Unfortunately, until all the medical testing is done, I can't go gluten free to test the theory for myself. At least once the tests are done, I am free to test for other things through the doctor while going gluten free on my own. I'm not convinced I do or do not have Celiac. I just know I have something that needs to be delt with.