Every Symptom Of Celiac With A Negative Biopsy :(

[Kittenfire]

Hi there. I have a long post I need help with.

After eating primal for about a year (all of 2011), this past December I had a lot of gluten while baking for a party (much more than usual. To define usual, this was pretty low levels of gluten). Then, I went to said party, had several cookies and a cupcake (and noodles). I ended up getting sick, and had a rash the next morning.

My doctors said it was a contact allergen. This went on for a while. When it kept spreading, I was given a Rx for prednisone. The rash spread from my face to my body and lasted 7 weeks. I was then told (4 docs later) it was a viral infection. It was a really awful rash (and looks exactly EXACTLY like dermatitis herpeformis - and I am SO grateful I took photos).

Nearing the end of the rash, my tongue suddenly felt burnt. Really strange sensation. Then other things happened in life (my dad died, we were in the middle of buying a house) so I put off seeing my doctor. A month later, my tongue still felt burnt, swollen, red and kind of numb-ish in the center. Really dry mouth, metallic taste, etc. I first tried changing my toothpaste, drinking more water, but nothing provided relief.

Saw my doctor, who was baffled. She sent me for blood work. It showed nutrient and mineral malabsorption (biggest problems: iron deficiency anemia, B6, B12, zinc, folate). I also had some other issues: high SED rate, low red blood cells, high white blood cells. I was then referred to gastroenterology.

After doing some research (and getting fed up after having what I believe was a reaction after Valentine's Day dinner where I had some bread at dinner), I decided to go gluten free. I had really bad night sweats after the bread. I have had night sweats for the past year.

I didn't see the specialist until a month later. At that point, I'd been gluten-free for 4 weeks.

Doc scheduled a endoscopy, and said that we'd do a bunch of other testing in the meantime. He said being gluten-free was fine, but he wanted me to do a gluten challenge for 2 weeks before the biopsy, so we could confirm celiac. 2 pieces of wheat bread a day would suffice.

During my gluten-free time, I had no migraines, no rashes, no night sweats. (Backstory: I've had migraines since I was 10.)

Things that were ruled out in the meantime: H.pylori, pancreatic issues (including cancer), lymphoma, kidney function issues, IBS, lactose intolerance, parasites.

I reintroduced gluten as directed, and the results were not good. I took photos for the doc to show him. I first had facial flushing, which was followed by flushing of the body. On the 2nd day, my lower lip swelled and itched and then my face when numb/bumpy like it did right before the rash I had in December. My face was so swollen, it took about a week to go down (along with antihistamines to help). Also the left side of my face began to sag. The photos are really scary.

Overnight, my lips continued to swell, until they split. Looked about as awful as it sounds. I also had vision issues for a week (blurry, seems like what I usually experience as a migraine precursor).

I called my doc, who said this is a bad reaction, and not to have gluten anymore, but we'd still do a biopsy in 2 weeks.

The endoscopy revealed gastritis (??) and no celiac.

My doc said there is no reason he can determine for the malabsorption, but to continue with the gluten-free diet, and high levels of vitamins they've put me on, and he'll see me in 2 months.

What in the heck do I do now? I still have issues with my tongue and I'm not sure what I do about all the other stuff. Is this normal? I am feeling so frustrated after months of being sick. I am having great relief from the gluten-free diet, though I feel as though I've been through the ringer with this.

Thanks for any feedback you can provide.

[nora-n]

you need to be back on gluten fro at least six weeks, not two weeks for a positive gut biopsy.

And two slices of bread is for a child, as the recommended amount of gluten per day is at least 0,3 grams per kg. The latest recommendations I have seen is 0,5 grams per kg.

It works out more like half a bread to do enough damage for the biopsy to be positive.

There is also a biopsy for DH, did they attempt that?

[Cara in Boston]

My doctor told me I needed to eat 2 slices of bread for 3-6 months - and this was after only 2 weeks of eating gluten free. I only made it 4 months and even then, my biopsy was negative. This was after having a high positive on the blood test. Since my son was diagnosed with celiac, I didn't see a reason to continue to eat more gluten just to try to get a positive diagnosis. I knew how I felt with gluten and how much better I felt without it. The decision was easy.

You clearly have a negative reaction to gluten and your doctor clearly does not know enough about celiac disease to diagnose you or even treat you.

I would stay gluten free for three months and if you still have weird symptoms, return to a (new) doctor and try to figure out what else it could be.

Cara

[Kittenfire]

you need to be back on gluten fro at least six weeks, not two weeks for a positive gut biopsy.

And two slices of bread is for a child, as the recommended amount of gluten per day is at least 0,3 grams per kg. The latest recommendations I have seen is 0,5 grams per kg.

It works out more like half a bread to do enough damage for the biopsy to be positive.

There is also a biopsy for DH, did they attempt that?

Thanks so much for your reply. Given the reactions I've had, I simply don't think that'd be possible. What is DH?

[Kittenfire]

My doctor told me I needed to eat 2 slices of bread for 3-6 months - and this was after only 2 weeks of eating gluten free. I only made it 4 months and even then, my biopsy was negative. This was after having a high positive on the blood test. Since my son was diagnosed with celiac, I didn't see a reason to continue to eat more gluten just to try to get a positive diagnosis. I knew how I felt with gluten and how much better I felt without it. The decision was easy.

You clearly have a negative reaction to gluten and your doctor clearly does not know enough about celiac disease to diagnose you or even treat you.

I would stay gluten free for three months and if you still have weird symptoms, return to a (new) doctor and try to figure out what else it could be.

Cara

Whoa, really? (I'm actually also in Boston and I thought my doc was knowledgeable, as he's supposed to be a specialist in the area of celiac. I'm not really sure how.)

You poor dear - you must've felt awful for those 4 months!

Since my doc didn't want to see me for 2 more months, is that to see how I improve on a gluten-free diet? Would they retest blood at that point to see how my absorption is?

I was thinking I'd change doctors, but unsure if I should just wait until I see this doc for follow up, etc.

I guess I just WANT a diagnosis of some kind. My doc's RN mentioned they'll be referring me to neurology.....I am just feeling totally overwhelmed. I really don't think it's a neurological issue!!

[Kittenfire]

So sorry - I just realized DH is derm herpeformis. They did not do any testing for it. They said it was a contact allergen, so gave me a steroid cream to put on it.

When I put it on, the burning got so much worse. I ended up putting cold compresses on my face to get the burn to cool down. When it spread to my neck, I went a 2nd time. Doc said benadryl around the clock until it's gone. (I missed a week of work. It was really bad. I couldn't sleep, either - despite the stream of benadryl.)

When it started to get to my body, the new doc gave me the Rx for prednisone. When it was still there.....a week later, I was referred to dermatology. Dermatology called it a viral infection and said it would probably last a month, cause unknown. That was the most they did for me.

[mushroom]

Has you rash ever recurred?

[Kittenfire]

Has you rash ever recurred?

When I reintroduced the gluten a couple weeks ago, I had the same symptoms that I had right before that huge outbreak in September, complete with itchy mouth and the left side of my face (same spot as before) feeling sort of funny. Really hard to describe the exact feeling. I had bumps and a lot of redness around my mouth, and then my chin/lower left side of my face was really itchy. When I scratched, if felt kind of numb. (Doc said this was a histamine response.)

I took anti-histamine right away. That was my only other time.

[beachbirdie]

Hi there. I have a long post I need help with.

Doc scheduled a endoscopy, and said that we'd do a bunch of other testing in the meantime. He said being gluten-free was fine, but he wanted me to do a gluten challenge for 2 weeks before the biopsy, so we could confirm celiac. 2 pieces of wheat bread a day would suffice.

During my gluten-free time, I had no migraines, no rashes, no night sweats. (Backstory: I've had migraines since I was 10.)

Things that were ruled out in the meantime: H.pylori, pancreatic issues (including cancer), lymphoma, kidney function issues, IBS, lactose intolerance, parasites.

I am wondering what specific bloodwork was done? I don't see mention of celiac blood tests.

It is possible also that you are non-celiac gluten intolerant. It is a very real syndrome which causes discomforts/symptoms like celiac, but does not cause the damage.

[Kittenfire]

I am wondering what specific bloodwork was done? I don't see mention of celiac blood tests.

It is possible also that you are non-celiac gluten intolerant. It is a very real syndrome which causes discomforts/symptoms like celiac, but does not cause the damage.

The blood work that was done was iron, and other vitamins (B6, 12, folate, calcium, zinc), ANA (doc thought it was Sjogrens), SED, CBC, TSH, Amylase, electrolytes, hepatic function panel, pancreatic elastase. After I was gluten-free, they tested for IgA and TTG. Both came back "inconclusive" said my doctor. The rates were mid-range and I wasn't consuming gluten.

I wish I had been tested when I was having a reaction.

Thanks for the feedback. I am feeling like I am a little bananas after 4 months of this.

[nora-n]

Some people get the private Enterolab tests when the ordinary celiac tests are inconclusive, the stool test is for ttg and maybe antigliadin in the intestine, where it appears first.

About DH, if you get a diagnosis for DH, this is automatically a celiac diagnosis.

[Kittenfire]

Some people get the private Enterolab tests when the ordinary celiac tests are inconclusive, the stool test is for ttg and maybe antigliadin in the intestine, where it appears first.

About DH, if you get a diagnosis for DH, this is automatically a celiac diagnosis.

Thanks for this info. I had stool tests (the 72 hr one), and the results were in, but nothing shows on my online record. I feel so stupid that I'm not sure what this was for. I thought it was for parasites?

So do I seek out another doctor? What would you do from here?

Also sorry to ask this, but I would need another rash in order to get a DH diagnosis right? When I'm not having gluten, I don't have rashes. I'm terrified of another one. It was really the worst I've experienced.

[ravenwoodglass]

IMHO you are diagnosed by the best test there is, your reaction to gluten. You may also have an allergy to wheat and or DH. You do need to have active lesions to have a DH test. They would biopsy the skin next to a lesion to look for the antibodies and the doctor needs to request the DH test from the lab.

Your stool test was likely as you thought for parasites. Most doctors do not use Enterolab and the tests they use are not peer reviewed. You can't order the tests in some states. Many have found them helpful but they are not diagnostic.

IF you do decide to do a gluten challenge then do see an allergist first. The lip swelling etc. could turn into a more severe reaction and the doctor might want you to have an epi-pen.

[GFinDC]

I am going to 2nd the allergist and the possible epi-pen too. It is possible to have both celiac and a wheat allergy. The allergy part is the more immediate threat though.

An endoscopy can only reach a small portion of the small intestines entire length. So the doc may not have seen damage if it was 2 inches farther along than his scope could see. Since you were having a severe reaction he told you to stop eating gluten. But that does mean the possibility of getting diagnosed with celiac is pretty low too.

Your's may be a case where it is more dangerous to get a diagnosis than than it is worth. But diagnosis or not, you do know your body can't handle gluten, so that is the main point anyway.

[pain*in*my*gut]

The blood work that was done was iron, and other vitamins (B6, 12, folate, calcium, zinc), ANA (doc thought it was Sjogrens), SED, CBC, TSH, Amylase, electrolytes, hepatic function panel, pancreatic elastase. After I was gluten-free, they tested for IgA and TTG. Both came back "inconclusive" said my doctor. The rates were mid-range and I wasn't consuming gluten.

I wish I had been tested when I was having a reaction.

Thanks for the feedback. I am feeling like I am a little bananas after 4 months of this.

I would request the actual lab results of the celiac panel they did on you. There is really no such thing as inconclusive test results. The docs that don't know enough about celiac say that when everything isn't positive on the panel like it's supposed to be. If you had mid-range ttg after being gluten-free for 4 weeks, you probably have celiac. Did they not do anti-gliadin ABS or the newer DGP? Also, have you had the gene test to see if you have the genes? That could give you some answers as well.

Sure sounds like celiac/DH to me!!!

[Kittenfire]

IMHO you are diagnosed by the best test there is, your reaction to gluten. You may also have an allergy to wheat and or DH. You do need to have active lesions to have a DH test. They would biopsy the skin next to a lesion to look for the antibodies and the doctor needs to request the DH test from the lab.

Your stool test was likely as you thought for parasites. Most doctors do not use Enterolab and the tests they use are not peer reviewed. You can't order the tests in some states. Many have found them helpful but they are not diagnostic.

IF you do decide to do a gluten challenge then do see an allergist first. The lip swelling etc. could turn into a more severe reaction and the doctor might want you to have an epi-pen.

Oh gosh, thanks so much for this. I do not wish to reintroduce gluten, based on what happened. However, perhaps an allergist will be able to help me. I would really love an official diagnosis, b/c all this shrugging is really just frustrating. I am sure loads of others have gone through this already, but man....It's such an emotional roller coaster!

Several of the docs I've seen think it's autoimmune, but they were not able to nail it down. I also have chronic migraines, Raynaud's and arthritis. Mom has Hashimoto's and dad died of colon cancer in January. He was never tested for celiac, though. He was giving a Dx of "a bum stomach" and docs just assumed it was IBS. He was never tested for IBS either. The more I think about it, I'm wondering if there is more going on here, genetically, than I thought.

I spoke to my dad's sister and she said her son (my cousin, who passed away a couple years ago of gliobastoma) was thought to have celiac for years but that the doctors suddenly stopped testing him. They said he had IBS in the end, as well, despite the rashes he was enduring. Anyway, that's additional info FWIW.

Thanks, everyone, for making me feel normal.

[Kittenfire]

I would request the actual lab results of the celiac panel they did on you. There is really no such thing as inconclusive test results. The docs that don't know enough about celiac say that when everything isn't positive on the panel like it's supposed to be. If you had mid-range ttg after being gluten-free for 4 weeks, you probably have celiac. Did they not do anti-gliadin ABS or the newer DGP? Also, have you had the gene test to see if you have the genes? That could give you some answers as well.

Sure sounds like celiac/DH to me!!!

After reading all of these comments, I definitely did not have a celiac panel done. No anti-gliadin ABS or DGP. My results were just middle of the range, and negative. Doctor said it was inconclusive b/c I wasn't consuming gluten, and it therefore didn't mean I did or did not have celiac. So, they proceeded with biopsy anyway. I haven't had the gene testing, either.