I'm Sure This Is Celiac, Why Doesn't My Doctor Agree?!

[Honey015]

I am really hoping to find some answers here. Currently feeling confused, annoyed, disappointed with my doctor (seems to be common!), and unsure what to do next.

I have had digestion issues for years (i am 31), mostly diarrhoea, gas, bloating etc. Over the last two years (but especially the last ten months) my symptoms have increased to where I have had bouts of unexplained diarrhoea for weeks at a time, gas that is so horrendous it makes me feel sick (!) along with painful trapped wind, hives on my face and neck, nausea after eating, rashes on both elbows and the backs of my hands that are maddeningly itchy, constant tiredness, pigment changes on my forehead, anxiety (i had to leave my nursing course because of panic attacks that came from nowhere), palpitations, dizziness, a previous diagnosis of IBS and now, macrocytosis (enlargement of red blood cells).

This Christmas, after three weeks of constant diarrhoea, and when I was beginning to think that something was seriously wrong, I happened to read an article about celiac disease. It was like a lightening bolt. It was me! So, I decided to cut out gluten to see what happened. Well, after a couple of days, the constant gurgling, bubbling of my stomach had stopped, the gas went, the diarrhoea had stopped, my "nervy tummy" feelings stopped, I felt more energetic, and better than I had for a long time. I decided to see my doctor (one I respect and like a lot), to see about getting tested. Of course, I went in telling him I was pretty sure I knew what was wrong! He agreed with my symptoms, but said that celiac was unlikely due to me not being anaemic and not having lost any weight (I am 5"2', 121lb / 8st 9lb). I had to eat gluten again for a week before my blood test (after a month of gluten free), I don't know if this is long enough, but my test (anti tissue transglutaminase) came back negative. I was so disappointed! I really thought this would be the answer, but also know there can be false negatives and was not deterred!

I went back to my doctor for a "what now" discussion, to which he said my ferritin was normal (54 ug/L) and the celiac test was negative, therefore I do not have celiac, maybe IBS. I asked him to diagnose my rash, which he says is pustulating psorriasis. I have looked this up, and it is nothing like what I have, at all! I feel like he has decided I am not celiac, so he will not 'fuel my fire' by telling me anything thT fits. I do, however, have to have a repeat blood test as my MCV is 101.1, from a range of 80-98, so he wants to check my B12 and folate levels. No rush, he tells me, it doesn't really mean anything. Except that it COULD be caused by celiac, after I looked it up! I don't see how he can be so closed minded, when I have SO many symptoms that fit. I requested the blood results from this time, and from almost a year ago, and saw that my MCV back then was 97.2, which I think would be right, considering my B12 levels could have been diminishing for the last couple of years, consistent with my increasing symptoms.

I should add that my mother and sister also have bowel issues. My mum and I have always said, "I don't eat breakfasst, it gives me stomach cramps", but now I wonder if it is because of WHAT we were eating!

I apologise for the reaallllyy long post, but I'm not sure what to do now, as I feel like my doctor is a dead end. I was going to get a home celiac test, and see how that goes, as I have been eating gluten again for about four weeks now. I was hoping for some suggestions or opinions from any of you. I would like a concrete diagnosis, partly for social reasons, partly psychological reasons, and also because I have three young children who may be affected if I have celiac.

Thank you, in advance for any help offered.

[itchy]

It sounds very much like you have both gastrointestinal coeliac symptoms AND dermatitis herpetiformis.

A large number of us don't have 'concrete' diagnoses, because of false negatives in testing.

A large number of us have experiences similar to yours with respect to 'uninformed' physicians. (and a few idiots)

It would seem that you got relief from not eating gluten. Go with it. If you feel better, you shouldn't be put off.

There are other ways of being 'diagnosed'. For example if your rash responds to the drug 'Dapsone' that might be enough.

If you read through the archives, you will learn a great deal about your condition. DH may take months or years to go away, but you should start to get some relief fairly soon.

Also, your stomach cramps after eating breakfast may be due to milk intolerance, which often goes with being coeliac. Many find they can tolerate milk better after their coeliac is under control, especially milk products like yougurt.

[dreacakes]

You don't need your doctor's validation. (I know our society tells us that we do, but really, we don't. We can take back our own personal power.)

Do your research and heal yourself! After 8 years of misdiagnosis, that's what worked for me.

[squirmingitch]

Firstly, from what I understand you have to be eating gluten for a bare minimum of 1 month before the tests. Others here will come along no doubt & nail the amount of time & how much you have to ingest. And you said you were gluten-free for a month & then ate it for a week before the test. So right there it puts the test results in doubt. The doc said celiac was unlikely due to not being anemic. Although I am self diagnosed (by textbook dh) I had high iron levels in my blood work only 7 or 8 mos. prior to my first giant major dh outbreak but was having dh blisters when I had the blood work done just for the routine once a year see your primary care doc stuff. Your not being anemic doesn't mean anything except you weren't anemic YET. And let's hope no one gets to anemia before they discover they have celiac disease. BTW, all my blood work came back just fine & dandy & I had been having blisters for 2 or 3 years & bloat & gas & what I call non digestion -- a feeling different than indigestion --- for at least 7 years. I am also 5'2" & had weighed 103 since I was 14 (55 now) but 7 years ago I lost 5 lbs. -- when I told the docs they would just laugh at me. But it was of great concern to me as I had always been steady as she goes no matter what I ate or didn't eat for all those years. I could step on any scale any where, any time & 103 would show up. I tried eating like a demon to gain the weight back but nothing tipped the scales over 98 lbs. to this date. But it just goes to show you that one doesn't necessarily lose great amounts of weight when they are celiac. In fact, there have been discussions on here of a lot of people NOT being able to lose weight & having been overweight for many, many years. Each person is an individual.

You say you have been eating gluten for about 4 weeks now. Question: have your GI symptoms returned? That would be a big clue.

It sounds like your rashes could be dh. It does present differently in different people at different stages of the disease. I think one of the best indicators of dh as opposed to other skin rashes is that dh presents bilaterally most often. When you get your rashes do they appear on one side of your face or 1 hand or 1 elbow & then within a few days begin breaking out on the other side of your face or other hand or other elbow? Or do both sides break out simultaneously? Those examples would both be considered bilateral.

Is the doc you saw a GI? Even if he is then I would find another GI who has experience in celiac if you really wish for a concrete diagnosis. You know why so many of us here have said to heck with the "expert" diagnosis. I understand you wanting it for your 3 young children but you may have to opt for knowing yourself & being content with that. You could have the gene marker test done not only on you but on your kids if yours turns out with one gene. If you turn out with 2 genes then you pretty much have your answer.

You already know that gluten free worked for you. That is all you may ever know unless you beat your head against a brick wall for years & years with doctors.

Don't apologize for the long post. The more info. the better so no worries in that regard.

hoping you find peace with whatever you decide to do. And let us know how things turn out too.

[zippitty5]

go gluten free. It can't hurt you and you've already experienced that it can help. I had a horrible rash allover my body two weeks ago that I had since early December. I went gluten free and now have only a few blisters here and there. I am awaiting the results from abiopsy. Whatever the outcome I will remain gluten free. Many of my family and friends are say it's probably not gluten, just something else you got into. Whatever, I will never go back rights horrible sleepless itching again.. Good luck to you

[weaselfish]

I am really hoping to find some answers here. Currently feeling confused, annoyed, disappointed with my doctor (seems to be common!), and unsure what to do next.

I have had digestion issues for years (i am 31), mostly diarrhoea, gas, bloating etc. Over the last two years (but especially the last ten months) my symptoms have increased to where I have had bouts of unexplained diarrhoea for weeks at a time, gas that is so horrendous it makes me feel sick (!) along with painful trapped wind, hives on my face and neck, nausea after eating, rashes on both elbows and the backs of my hands that are maddeningly itchy, constant tiredness, pigment changes on my forehead, anxiety (i had to leave my nursing course because of panic attacks that came from nowhere), palpitations, dizziness, a previous diagnosis of IBS and now, macrocytosis (enlargement of red blood cells).

This Christmas, after three weeks of constant diarrhoea, and when I was beginning to think that something was seriously wrong, I happened to read an article about celiac disease. It was like a lightening bolt. It was me! So, I decided to cut out gluten to see what happened. Well, after a couple of days, the constant gurgling, bubbling of my stomach had stopped, the gas went, the diarrhoea had stopped, my "nervy tummy" feelings stopped, I felt more energetic, and better than I had for a long time. I decided to see my doctor (one I respect and like a lot), to see about getting tested. Of course, I went in telling him I was pretty sure I knew what was wrong! He agreed with my symptoms, but said that celiac was unlikely due to me not being anaemic and not having lost any weight (I am 5"2', 121lb / 8st 9lb). I had to eat gluten again for a week before my blood test (after a month of gluten free), I don't know if this is long enough, but my test (anti tissue transglutaminase) came back negative. I was so disappointed! I really thought this would be the answer, but also know there can be false negatives and was not deterred!

I went back to my doctor for a "what now" discussion, to which he said my ferritin was normal (54 ug/L) and the celiac test was negative, therefore I do not have celiac, maybe IBS. I asked him to diagnose my rash, which he says is pustulating psorriasis. I have looked this up, and it is nothing like what I have, at all! I feel like he has decided I am not celiac, so he will not 'fuel my fire' by telling me anything thT fits. I do, however, have to have a repeat blood test as my MCV is 101.1, from a range of 80-98, so he wants to check my B12 and folate levels. No rush, he tells me, it doesn't really mean anything. Except that it COULD be caused by celiac, after I looked it up! I don't see how he can be so closed minded, when I have SO many symptoms that fit. I requested the blood results from this time, and from almost a year ago, and saw that my MCV back then was 97.2, which I think would be right, considering my B12 levels could have been diminishing for the last couple of years, consistent with my increasing symptoms.

I should add that my mother and sister also have bowel issues. My mum and I have always said, "I don't eat breakfasst, it gives me stomach cramps", but now I wonder if it is because of WHAT we were eating!

I apologise for the reaallllyy long post, but I'm not sure what to do now, as I feel like my doctor is a dead end. I was going to get a home celiac test, and see how that goes, as I have been eating gluten again for about four weeks now. I was hoping for some suggestions or opinions from any of you. I would like a concrete diagnosis, partly for social reasons, partly psychological reasons, and also because I have three young children who may be affected if I have celiac.

Thank you, in advance for any help offered.

Hi Honey015,

2 points I'd like to make that have worked for me. 1) NO-ONE knows you better than YOU !!!, and 2) Be thy own physician. If you, like me, eliminate gluten, and we begin to heal, is it not obvious where as Robert Plant once sang; " where the pressure lies ??? "

Good Luck and be well, YOU know what you need to do, and know this . . . it works

WF

[Honey015]

Thank you so much to you all for replying! It's nice to know there is such a vast 'database' of knowledge and experience out there to turn to. When I see my doctor, with a list of things to ask, I end up giving up and not bothering, feeling like it would be dismissed, so thank you all for giving me somewhere else to turn.

With regard to my rashes, it first started on my elbows, and would come up on both, with one side usually being worse. It starts with one or two itchy bumps, that then spread until the skin becomes red and slightly raised in the general area, with these fluid filled bumps all over it. Then after a week or two, the bumps dry put, and the skin flakes off, like a psorriasis. The hand rash started when I wasn't eating gluten, but, I have to admit, cheated and had a Chinese meal with my parents. Within half an hour, I was on the toilet, and then two days later, these bumps started appearing over the back of my right hand, sort of around the base of the thumb, spreading over the back of the hand, with a few small ones dotted up the backs of my fingers, and a small patch of blisters on the outside edge of my hand also. Oh my goodness, the itching. My husband has woken me in the night because I've been scratching in my sleep. The hand rash does not flake upon drying out, like the elbows though.. I have a pretty good photo of when the hand is bad which I'll try and upload at some point. I have had a few spots in the same place on the other hand, but not as bad as the right.

What was interesting, was when I was gluten free, all the GI symptoms cleared up, and i almost felt empty, as it was so unusual for me not to have the constant bubbling, gurgling and gas! Even my anxiety things went. If I got glutened by mistake, then I would have a 'bowel reaction' within a few hours, if that, but when I deliberately started eating gluten again for the week prior to my blood test, it wasn't as bad as I was expecting/dreading! Now, after four/five weeks, I feel like the symptoms have returned, as they were before. This tempts me to get the home test, as I feel like it would get a better reading. Interesting about the dairy link too, which could explain those times when you think you have been really careful, but still get an upset stomach etc. I drink a lot of tea and coffee, and therefore, milk.

I am going to continue with gluten until I get my next bloods done, and possibly the home test, and I might try and see a different doctor beforehand, to try and ask for an extra celiac test, as I only had the anti-endomysial/ant tissue transglutaminase last time. Should I ask for the anti gliadin? My result came back as just negative, with no number for me to look up.

All your support and advice is greatly appreciated. Thank you.

[itchy]

Regarding anemia.

I had a similar experience. The first doctor I approached said that he could tell I wasn't coeliac just by looking at me. Presumably this was because I wasn't anemic. (At that point I hadn't developed DH).

But many with DH don't get as bad gastrointestinal problems as others, and won't develop anemia to the same extent.

[Honey015]

I've just remembered aswell, that when my elbows first started coming up, well before I had ever considered it may be linked to the GI issues, I had seen a different doctor, and mentioned it, telling him I thought it could be something called dermatitis herpetiformis, because of the images and description that had matched it on the Internet. I don't remember what he thought, as it wasn't the reason I was there, but he obviously never linked it to my GI things such as the constant upset stomachs. Just funny that before I knew what DH or celiac was, I had already self diagnosed it as a possibility, without any clue about the implications.

I'm beginning to think that maybe I have worked this out quite early (luckily) into this 'journey', before the damage is too severe, and that could be why I'm not anaemic etc. I find it infuriating that there is so little interest from professionals, considering the long term effects and damage that is done. It's dangerous. Doctors (and I think probably what we call GP's in England, family doctor in US?), should do everything to rule celiac OUT, not try to convince you it's anything BUT.

[Ryniev]

You've almost written my story. I've had IBS, eczema, an incorrect diagnosis of palmo/plantar (?) psoriasis, tested for Lupus, depression, stress, fibromyalgia blah, blah, blah. I've been given steroids, steroid creams, somthing kind of cream for psoriasis (if it gets better it's psoriasis, worse, it's not) every anti-histamine on the market, anti-depressant to calm my stomach (they give me diarhea) sleep meds, etc.

It started in my 20's and the weird vague symptoms started about 7 years ago.

Best of luck to you! Hope you feel better soon.

[ciamarie]

Hi, it looks like I got to this thread a bit late. And you've already gotten some great relies. I did want to suggest that perhaps you could get a DH diagnosis easier than being diagnosed through the blood tests and GI. I'm not sure if that's possible in England, where it sounds like you're from? Basically DH = celiac, from what I've read.

Also, if the rash on your hand came out after eating Chinese food, I'd suspect it's due to MSG. I've discovered that is something I need to avoid along with gluten.

[Honey015]

No replies are too late, it's lovely to get them!

I have read about msg aswell, but not sure if it contains gluten, or is a separate allergen. Also, I think there are certain things in America that are gluten free, that aren't in England, which is a pain when trying to find out what's safe and what's not! (I think my reaction was also because of batter, and noodles!).

[Honey015]

Can anyone tell me please how to upload a photo here? Thanks!

[squirmingitch]

Read this link maybe it will help. i need to learn myself as I have no idea how to on this board either.

https://www.celiac.com/forums/topic/74131-avatar-photo/

[Honey015]

Well, here is my attempt to upload the photo of my hand, and possible DH rash! Hope it works. Please let me know what you think.

Open Original Shared Link

[squirmingitch]

Looks like what my dh on my hands looks like. Are there little fluid filled blisters? Sort of hard to tell in the photo if there's clear fluid in them or not. Mine have fluid filled blisters but not everyone has the fluid filled all the time. Even myself. Sometimes it just presents as sort of an insect bite type of thing. I think when they are doing that (no, I know) they are not as severe & don't itch as long & don't last as long & don't turn into nasty lesions. I can have both on my body at the same time.

[Honey015]

Yes, they are like lumps with a fluid filled centre. Almost like a volcano I suppose, that's the best way I can describe them! They are not what you would call an actual blister, like from a burn or a rub. More pimple like. And the area surrounding them gets raised and red, probably from the scratching. They cleared up on my hand probably four weeks ago, but there is still discolouration there, like scarring, and the skin is drier than before. My doctor (who thinks it's pustulating psorriasis!) advised to put steroid cream on it. My stomach is pretty bad at the moment and one of my elbows has started to flare up, so I might try and get a photo of that if it gets bad enough!

[squirmingitch]

You can have your answer easily enough. Go off gluten again & if the GI issues & the rash goes away then there is your answer. I will tell you from my experience though that the rash can take some time to subside & you may also need to go low iodine to help it along. If you keep eating gluten & your rash is truly dh then I can tell you the rash will only get worse. Breaking out in more places, more severely, & longer lasting. Let me tell you it AIN'T pretty nor is it easy to live with. Having said that ~~~ the rash can also subside for periods of time own it's own but if it's dh you can bet your bottom dollar it will be back & worse.

[Avalon451]

Can you see a dermatologist to have your rash biopsied for DH? That is how my daughter was diagnosed celiac. They would need to biopsy a current, active lesion-- on the lesion, and then right next to it on the clear skin. It can be hard to get a good biopsy unless the dermatologist is familiar with the procedure (ours is, but it still took her two tries). A postive skin biopsy for DH is as good as a positive endoscopy biopsy for celiac diagnosis.

I feel for you with the horrible itching. DH rash is supposed to be the worst itchiness known to humans. Not unusual for my daughter to wake up with the sheets bloodied because she was scratching her knees.

I hope you get some answers (and some relief) soon!

[squirmingitch]

The skin biopsy is NOT I repeat NOT done taken ON the lesion!!!!!!!!!!!!!!!!!!!!!!!!!!! That is why people come up with false negatives. Because Derms don't know how to do it right & people getting it done don't know any better either. Avalon, I understand your daughter had 2 places biopsied ~~~ 1 ON a lesion & 1 adjacent to a lesion. The 1 adjacent is where they came up positive.

QUOTE:

It's important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

Open Original Shared Link

And another:

A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA. Open Original Shared Link

[Avalon451]

The skin biopsy is NOT I repeat NOT done taken ON the lesion!!!!!!!!!!!!!!!!!!!!!!!!!!! That is why people come up with false negatives. Because Derms don't know how to do it right & people getting it done don't know any better either. Avalon, I understand your daughter had 2 places biopsied ~~~ 1 ON a lesion & 1 adjacent to a lesion. The 1 adjacent is where they came up positive.

QUOTE:

It's important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

Open Original Shared Link

And another:

A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence of IgA deposits. Skin biopsies of people with DH are almost always positive for IgA. Open Original Shared Link

Yup, although when I said she had two biopsies, what I meant was that the first one was on her elbow, on a lesion that was not particularly new. The dermatologist thought it was psoriasis. When it came back unreadable because of the damage, she started suspecting DH. The next biopsy she did was on a new lesion on DD's back. She told me that she was supposed to take one directly ON the lesion, then right next to it on clear skin, like 1/4 inch away (so two samples) so that the lab could compare them side by side, knowing that they came from the same area. One would be too damaged to read the fluorescent dye, the other would show the subcutaneous damage before it erupted.

I hope more dermatologists become very familiar with the proper technique and the rate false negatives can be brought down.

[mushroom]

Just to weigh in with a few additional points.

Macrocytosis: I had this for years, not grossly abnormal but consistently too high - my doc told me it was nothing to worry about. I stopped eating gluten in the hopes of helping my RA, but then found it helped my (almost lifelong) GI problems immensely, found this forum, self-diagnosed, the folks here helped me with my additional food intolerances and what else I should be tested for. So, amongst the other things, I was tested for B12 and folate, and both readings were in the gutter. Combine that with macrocytosis and it adds up to pernicious anemia, not iron deficiency anemia. My iron levels were perfectly fine I was also very low in Vitamin D.

Validity of testing: It is commonly recommended that to get the most valid result you should be eating the gluten equivalent of 3-4 slices of bread per day for a period of two to three months. One week in the scheme of things does not amount to a hill of beans. Most docs are not aware of this and make wild guess recommendations. Even then the testing can be a false negative as there is a 20% error rate on testing. If you were to have further testing done (after eating gluten for at least 2 months!!) ask them to run the DGP (deamidated gliadin peptide) which is the newer test and seems to be the most specific for celiac disease. Did they run the total serum IgA at the time of your last testing to assure you were a normal IgA producer?

DH biopsy: The quickest way to get a diagnosis which does not involve the consumption of enormous quantities of gluten. So long as you have an active lesion, and you have a dermatologist who knows what they are doing, if you in fact have a positive DH biopsy you are celiac by definition, as this is the skin form of celiac. Avalon's post is the first I have heard of taking a biopsy of the lesion itself; all other information I have read is just to take the biopsy from the skin immediately adjacent to the lesion.

I wish you success in getting an acccurate diagnosis.

[itchy]

I'm in the UK as well.

There are some advantages to having an actual diagnosis in the UK because you can get certain gluten free food on prescription, on the NHS.

Because I'm not a resident, I don't qualify, but you might.

Regarding Chinese food mentioned earlier, there are many avenues for gluten to be found in Chinese food, wheat noodles, sauces, etc. Soy sauce which is not specifically labelled gluten free is a risk. I reluctantly avoid ethnic restaurants because most of the meals are complicated, very likely to include gluten, and it is sometimes difficult to communicate with the staff. A big loss for me. There are some kinds of restaurant meals that are lower risk. Salads are your friend. Jacket potatoes are a default lunch item when all else fails.

Luckily in the UK you can find labelled gluten free food almost anywhere.

There have been other Brits posting in the past. Feel free to ask for info.