Negative Blood Test-Poitive Biopsy

[Bubba's Mom]

I was DXed with Celiac in June 2011, and went strictly gluten-free with a whole foods diet. Since then I've reacted to additional foods including soy, dairy, peanuts, tomatoes, MSG, yeast, sunflower seeds, and have ongoing symptoms.

A second scope 6 months gluten-free showed no healing. I was referred to Mayo Clinic in FL. They did a few tests and had more questions than answers and referred me to the Mayo Clinic in MN.

I met with Dr. Murray here today. He's the head of the Celiac Center and does a lot of research. He said he's seen a lot of people like me, who aren't healing on a gluten-free diet..and reacting to more and more foods.

He's ordered a battery of tests to see if we can rule some things out, or rule some in.

I had a list of my current meds, but he was more interested in my past meds. In particular, past high blood pressure meds, but others too. They are finding that some people are reacting to some medications with eneropathy (villi flattening) which continues even after the medication is stopped. He said they can can give an "antidote" to some of these meds, and stop the damage so we can heal.

I told him there are quite a few of us that fall into the negative blood, positive biopsy, reacting to more and more foods, group. He was very interested and asked if anyone would share what meds they were on before being DXed?

In my case he really raised his eyebrows at Lisinopril which I had to stop taking because it caused me to cough a lot.

Sooo..anybody care to share what meds they were on before their symptoms started?

[rosetapper23]

Well, I had tried a lot of blood pressure meds, but they all disagreed with me--especially Lisinopril! After only one dose, I went for a jog and began to feel sick to my stomach. I wandered home and began projectile vomiting moments after arriving. I felt as though I was going to faint, so my husband drove me to the Emergency Room. There they discovered that my blood pressure was almost non-existent. I ended up staying there until 5:00 a.m., and during that time my body's tissues swelled up so much, my internal organs were in terrible pain. I thought I might die, and even gave my husband directions on how to divide my personal property between our children. I went home, but I returned the next day because of the internal pain. It took weeks before my internal organs stopped feeling bruised from the swelling. After trying three more blood pressure meds, I was finally able to tolerate metoprolol.

This is the first time I've heard that blood pressure medications could cause damage. Oddly enough, I did end up with villi flattening about that time--I had to get iron infusions for the next two years because I couldn't absorb iron. Is there a connection??

[saintmaybe]

I was DXed with Celiac in June 2011, and went strictly gluten-free with a whole foods diet. Since then I've reacted to additional foods including soy, dairy, peanuts, tomatoes, MSG, yeast, sunflower seeds, and have ongoing symptoms.

A second scope 6 months gluten-free showed no healing. I was referred to Mayo Clinic in FL. They did a few tests and had more questions than answers and referred me to the Mayo Clinic in MN.

I met with Dr. Murray here today. He's the head of the Celiac Center and does a lot of research. He said he's seen a lot of people like me, who aren't healing on a gluten-free diet..and reacting to more and more foods.

He's ordered a battery of tests to see if we can rule some things out, or rule some in.

I had a list of my current meds, but he was more interested in my past meds. In particular, past high blood pressure meds, but others too. They are finding that some people are reacting to some medications with eneropathy (villi flattening) which continues even after the medication is stopped. He said they can can give an "antidote" to some of these meds, and stop the damage so we can heal.

I told him there are quite a few of us that fall into the negative blood, positive biopsy, reacting to more and more foods, group. He was very interested and asked if anyone would share what meds they were on before being DXed?

In my case he really raised his eyebrows at Lisinopril which I had to stop taking because it caused me to cough a lot.

Sooo..anybody care to share what meds they were on before their symptoms started?

Wait...is he saying that medication can *induce* intestinal damage? Or is he saying that medications exacerbate already existing celiac disease?

Both ideas are completely radical. If that's true, the high use of prescriptions in the U.S.would also explain the skyrocketing rates of celiac disease, even when controlling for better diagnosis.

I'm in the other category, positive bloods and negative biopsy. But this is still...really profound.

[Skylark]

Wow, this is interesting. What other meds did he ask about? Were any of them psychiatric meds? Or hydrochlorothiazide? Pick his brain and tell us what you learn!

I've reacted to wheat all my life so I don't think mine is primarily med-related but I'd sure like to know why I seem to have lost my dairy tolerance.

[Christine0125]

Eek... I take lisinopril. I am going to watch for any updates you have.

[dilettantesteph]

It may be that you are a super sensitive celiac, reacting to lower levels of gluten than the norm. Some medications may have trace levels of gluten. They may be made in the same facility where medications are made that contain gluten, for example.

Have you tried a diet of produce only with no grains or processed foods?

[mommyof4]

Hi...very interesting post. Dr. Murray at Mayo is my doctor also...he's fabulous! I was just diagnosed last Fall by my local doctor but sent on to Dr. Murray at Mayo after 3 months. My bloodwork was negative but biopsy positive...well at least by that 3rd month. The local doctor accidently did the incorrect blood test & by the time it was redone at Mayo it was negative, so we aren't totally sure.

Before being diagnosed I took IBProfin pretty much daily...I had such horrible headaches(which have resolved going g.free). The only prescription med I took was Immitrex for migraines. I have had a pretty slow recovery & am looking into other food sensativities or hormone issues.

Keep us posted on what you find out. Good luck at Mayo...hope they can help you!

[Bubba's Mom]

Well, I had tried a lot of blood pressure meds, but they all disagreed with me--especially Lisinopril! After only one dose, I went for a jog and began to feel sick to my stomach. I wandered home and began projectile vomiting moments after arriving. I felt as though I was going to faint, so my husband drove me to the Emergency Room. There they discovered that my blood pressure was almost non-existent. I ended up staying there until 5:00 a.m., and during that time my body's tissues swelled up so much, my internal organs were in terrible pain. I thought I might die, and even gave my husband directions on how to divide my personal property between our children. I went home, but I returned the next day because of the internal pain. It took weeks before my internal organs stopped feeling bruised from the swelling. After trying three more blood pressure meds, I was finally able to tolerate metoprolol.

This is the first time I've heard that blood pressure medications could cause damage. Oddly enough, I did end up with villi flattening about that time--I had to get iron infusions for the next two years because I couldn't absorb iron. Is there a connection??

Dr. Murray seemed to think that blood pressure meds are the most likely to cause enteropathy? When I was on Lisinopril it made me cough..a lot. I was on Hydrochlorthiazide along with the Lisinopril. When I complained about the cough I was told to stop the lisinopril, but keep taking the Hydro.

My blood pressure wasn't good on just the water pill so I was put on Metroprolol.

In my case, I'd say I don't think I had any villi damage, or at least no severe digestive symptoms before the blood pressure meds.

Singulair is another of my meds he questioned when they consulted with him when I was in FL. He took me off Zocor at that time too.

I'll ask him more about other meds but the blood pressure and Singulair seemed to spark his interest the most?

I could add that my sister with Crohn's was put on Lisinopril and had even worse symptoms than me. When she complained about the side effects she was told she had to get used to it. She had to go off it too, when she didn't get any better after a few weeks. I'm real interested to see what the results of my battery of tests will be.

Man..if these meds are causing so much trouble, and there's an antidote we need to some of them, that's really big news!

[Bubba's Mom]

Wait...is he saying that medication can *induce* intestinal damage? Or is he saying that medications exacerbate already existing celiac disease?

Both ideas are completely radical. If that's true, the high use of prescriptions in the U.S.would also explain the skyrocketing rates of celiac disease, even when controlling for better diagnosis.

I'm in the other category, positive bloods and negative biopsy. But this is still...really profound.

He wasn't clear if the meds induce the damage in everyone, but said they are studying genes along with this. The damage may happen in people with certain genes..or it could be across the board? he seemed to indicate that it caused the damage.

He asked to me toss the medication question out to the group to see if there are meds that keep coming up. It make it easier to figure out which meds could be offenders.

I was asked to enroll in their Celiac study program. They took a couple of extra vials of blood to do more gene tests, etc.

[Bubba's Mom]

It may be that you are a super sensitive celiac, reacting to lower levels of gluten than the norm. Some medications may have trace levels of gluten. They may be made in the same facility where medications are made that contain gluten, for example.

Have you tried a diet of produce only with no grains or processed foods?

I mostly eat whole foods with the exception of gluten-free Rice Krispies, and Koala crisp cereal. Both made in gluten-free facilities.

I don't eat any grains, except brown rice. No breads or baked goods. I have my own dishes and pans, even got my own microwave. I'm crazy careful..and will only eat food I've prepared myself...and yet I still react to more and more. I guess it's because I have a very leaky gut? I don't suppose the 3 endoscopes with numerous biopsies have helped that?

[dilettantesteph]

How about trying to cut out the cereal for a week and see what happens? Those items would give me major symptoms.

[Ninja]

I took singulair for a few years

[BabsV]

Hmmmmm, I've taken Singulair for almost 9 years for a dust allergy I developed post-pregnancy. If I don't take it I can feel it...asthma-like symptoms. Yikes!

[Bubba's Mom]

Singulair is supposed to be for allergies. If that turns out to be one of the culprits it's kind of ironic? We take them for our environmental allergies..and get food "allergies" from it?

[Bubba's Mom]

How about trying to cut out the cereal for a week and see what happens? Those items would give me major symptoms.

It looks like I'll be off the cereal for a week without trying? I have to fast for some tests, some days I can only eat certain things, and I have to eat nothing after 7am. They joke about the fasting/food restrictions. They call it the "Mayo Diet".

I've been very impressed with the facility and the way they run it. They put the patient's comfort very high on their list, and work very hard to get tests and appointments scheduled on pretty short notice. They've added a few extras for me and squeezed them in. It looks like I may have to come back the week of May 22 though? We're trying to see if we can get those squeezed in by going in and waiting on stand by.

Fingers crossed!

[dilettantesteph]

I hope they help you figure it out!

[dustynbob]

I am in the worst health care county in CA. I have been on glucophage for 6 years, and in that time i began taking Excedrin migraine. My blood sugar fasting went from 120 forever to 190 on 4 metformins a day. I was on blood pressure meds for a few weeks but got very ill and shortness off breath so off it now.

I had a colonoscopy last year and the doctor forgot to do a biopsy. I tested positive for celiac last month, although my allergy said i am not allergic to wheat. i have been on and off wheat for a couple months, not because i knew i had a wheat allergy but just because i noticed a huge bloating, i mean i look 10 months pregnant. They did a cat scan of my gut and from stomach to anus was swollen and inflamed. Yet NOTHING was done to relieve the pain, vomiting and diarrhea. No one suggested celiac but i requested a test, which they pooh pooh but my FNP ran it anyway and it was the only test to come back positive.

[squirmingitch]

Let us know how everything goes.

Cheering for you!

[Bubba's Mom]

I gave Dr. Murray the list of meds that were mentioned by others here. Once all of my tests came back there was no mention of toxicity problem from a past med. I don't know how they rule it out?

I was told that reacting to additional foods as time goes on can often be from a bacterial overgrowth. The bacteria emit toxins as they consume what's in the small intestine. Once the SIBO has been treated, we should be able to tolerate those foods again?

My hydrogen breath test showed high levels of methane, which shouldn't happen. It should only be in the colon. I was prescribed xifaxin for it.

Probiotics are good, but the way it was explained to me was..it's like there are parking spots in the intestine. If the parking spots are already filled with bad bacteria, the good ones have no place to park so they just pass through. We need to get rid of the bad, then the good bacteria can park there.

[saintmaybe]

I gave Dr. Murray the list of meds that were mentioned by others here. Once all of my tests came back there was no mention of toxicity problem from a past med. I don't know how they rule it out?

I was told that reacting to additional foods as time goes on can often be from a bacterial overgrowth. The bacteria emit toxins as they consume what's in the small intestine. Once the SIBO has been treated, we should be able to tolerate those foods again?

My hydrogen breath test showed high levels of methane, which shouldn't happen. It should only be in the colon. I was prescribed xifaxin for it.

Probiotics are good, but the way it was explained to me was..it's like there are parking spots in the intestine. If the parking spots are already filled with bad bacteria, the good ones have no place to park so they just pass through. We need to get rid of the bad, then the good bacteria can park there.

I was taking topomax, and that was making my gluten sensitivity a million times worse I just discovered. I took myself off of it, and immediately felt a million times better. You're really supposed to taper, but I couldn't stand the side effects. Topomax is for migraines by the way. If I continue to have headaches, I'm going to request Maxalt in May or Juneat my next annual.

This conversation has been so helpful for understanding some of the more severe side effects of celiac.

[Bubba's Mom]

I was taking topomax, and that was making my gluten sensitivity a million times worse I just discovered. I took myself off of it, and immediately felt a million times better. You're really supposed to taper, but I couldn't stand the side effects. Topomax is for migraines by the way. If I continue to have headaches, I'm going to request Maxalt in May or Juneat my next annual.

This conversation has been so helpful for understanding some of the more severe side effects of celiac.

Topomax! I forgot about that one. I went on it for migraines and had extreme brain fog. I felt like a stoner.

Went to the Hospital for a test and got hopelessly lost in their maze to the radiology dept. LOL I went off it after about 1 month because I couldn't function on it. This was a couple of years ago, long before I had even heard of Celiac.