Could This Be Cd?

[lushgreen]

Hello, I'm new to the board and would like to know what you think. I am a 35-year old female looking for answers to issues that have plagued me for so long!

- extreme fatigue, particularly severe right after a meal - most debilitating symptom

- frequent loose stools

- frequent need to pass stool: in the two hours since I've been awake, 4 times

- frequent need to urinate

- bloating (look pregnant)

- gas and burping

- often feel dehydrated

- very dry skin

- chronic dry eyes (always scratchy & itchy - use eye drops all day)

- itching

- eczema-like patches on face

- undiagnosed skin infection last year (bilateral, raised, red, hive-like splotches on thighs, waist, lower back)

- chronic vaginal infection that has not responded to any treatment

- chronic depression and anxiety especially severe with PMS

- diagnosed attention deficit disorder: focus and concentration issues (aka brain fog?)

- falling hair

- very long eyelashes

- ridged fingernails

There is family history of lactose intolerance in maternal aunt and her son. My sister is unable to gain weight and has had lifelong problems with constipation. My father has wondered about having irritable bowel syndrome but never sought a diagnosis.

Does this seem to fit the profile of someone with gluten sensitivity/celiac disease? I woud love to finally put an end to my quest to find out what is wrong with me!! Would appreciate any input!

Thanks!

[KaitiUSA]

Symptoms you have are ones that can accompany celiac. It's hard to tell from symptoms alone because some people don't get any and for others they vary. It's definitely worth getting tested for.

[celiac3270]

You definitely fit the profile. As Kaiti said, you can't know for sure without testing, but to go over them individually:

Fatigue is the most common symptom in celiacs--even moreso than loose stools, which are also extremely common. Frequent passing of stools, bloating, gas, all very common. Depression, anxiety, brain fog all associated with untreated celiac. Ridged fingernails and losing hair are both signs of celiac disease. Some of those I'm not aware with the connection, which is why I may have skipped a couple.

I met a woman recently who was diagnosed about two months ago. She has been told that she had eczema, but none of the treatment for it worked. A dermatologist finally realized it was dermatitis herpetiformis, a skin condition that is present ONLY in celiacs...so if you have it, you have celiac. Could that be what you have? Is it blistery? Present on face, or back of neck, scalp, thighs, buttocks? Those are the most common places, but it can be elsewhere. Also, does it seem to be bilateral? It's usually pretty symmetrical--doesn't have to be, but usually you'll have it on both arms or both thighs, or both buttocks....not just one. Two months on a gluten-free diet and she's a little overwhelmed still, but the dh is clearing up (that was her main problem) and she's feeling better.

Anyway, get tested!

[frenchiemama]

Most of your symptoms sound pretty familiar to me. The fatigue for sure. There has been quite a few times that I have had to pull my car off the road because I was so tired that I just couldn't keep my eyes open (in the middle of the day!).

The "infection" and eczema. I can't tell you how many times my DH was misdiagnosed as an infection. If I had to guess I would say that I have been on around 30 courses of anti-biotics in the last 2 years. Maybe more.

Depression and anxiety as well. I have suffered from depression since I was a child, but since I've been gluten-free I've been feeling really good. Also very, VERY moody and depressed with PMS.

Bloating, I used to have to think about what pants I was going to wear if I was going to eat out otherwise I would be miserable for the rest of the day. Not anymore.

Ridged fingernails and dry skin as well. Frequent need to pass stool, loose stools, gas, the whole 9 yards.

I would suggest that you get yourself tested right away. The gluten-free diet has been the best thing that ever happened to me.

[lushgreen]

Hi Kaiti, celiac3270 and frenchiemama - thanks for responding.

I do hope to get tested soon, though people around me are skeptical as celiac disease is rare in my ethnic group - South Asian.

celiac3270 & frenchiemama, fatigue and the cogitive symptoms are the most debilitating for me and the biggest challenge to work around. They've also gotten progressively worse - I now nap a couple of times a day, which I never used to. Every day I am tempted to skip meetings, wanting to cancel at the last minute, because I am just so pooped!

I'm not sure if the skin thing I had last year was DH - I just know that no one was able to figure it out. It was symmetrical, but on my thighs (all over) and back and hips - not around folds and joints as DH often is. Right now I have dry itchy patches on either cheek, next to my nose, a couple of small blisters on one side. Frenchiemama - 30 rounds of antibiotics?? It boggles me that a doc would not consider DH! You must be so relieved that you have the answer now! It is a relief to hear that you have had some of the same symptoms. I am gearing myself up for getting tested and getting way ahead of myself - the possibility of the diagnosis, getting on the diet, making lifestyle changes...I should slow down but right now I just so want to know if this is what it is...

Thanks again.

[frenchiemama]

DH doesn't have to always be around joints/folds. I do have it around my joints, but I also get it on the tops (front? whatever) of my thighs and on my hips where the seams of my pants rub. I also get it around my waist also where my pants rub. I get it very badly on the backs of my hands as well, and sometimes the corners of my mouth and forehead.

Anyway, you have a right to any tests you want even if your doctors are skeptical. I had some really crappy doctors before (one was a student health doc who had me on antibiotics for 4 straight months and the other was a "reputable" dermatologist who apparently doesn't know his a$$ from a hole in the ground) and I suffered much longer than I should have.

Never be afraid to seek a second (third, fourth...) opinion.

[celiac3270]

That sounds a lot like DH...bilateral rash, blistery in some places.

[lushgreen]

My next question is - how do I get tested? Do I have to see a specialist? Can any doctor send me to the lab to have the tests run?

[julie5914]

I would recommend getting referred to a gastro specialist - more chance they know what it is and how to test and treat. Blood tests will probably be done first and they may want an endoscopy if those are positive.

I had frequent infections too. I had a rash on both arms, sometimes blistery, but never itchy. Doctors said my skin was just not exfoliating properly and was clumping at the hair follicles. I would itch the skin off the front off my shins though. Seems to be improving gluten free. I bet you feel better gluten free whether you get a diagnosis or not. Make sure they get a CBC (complete blood count) too - sounds like you have some anemia. Mine got bad before we figured things out.

[KaitiUSA]

For the blood tests, any doctor can order them. Make sure you get a full panel though which includes the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

I would recommend seeing a GI doctor that has some knowledge about celiac disease as well. If an endoscopy is done after the blood tests then you definitely need a GI doctor for that.

Make sure you are on gluten throughout this testing period though

[Magdeliscious]

Lush green,

THe symptoms sound incredibly on point.

I would go ahead and get some blood work done asap!

[lushgreen]

Julie, Kaiti, Magdeliscious,

Right now I'm feeling awfully confused about testing: It does seem clear from your responses that it would be best to see a specialist rather than risk a doc who has no inkling what celiac disease is - thanks for validating that for me.

But beyond that, I have seen so much floating on this board - Enterolab, York, false positives/negatives, endoscopy yes/no, dietary challenge, as all ways to get diagnosed. As I'm working on a restricted budget, I'm trying to figure out the most efficient way to get to the bottom of this. I fear I may be embarking on something that will snowball into endless tests and investigations.

I think part of the reason that I'm feeling worried is also because I'm thinking anemia? (thanks for pointing that out to me Julie) Sjogren's? Hypthyroidism? (also have extreme cold intolerance) adrenal fatigue?

As I write this, I'm feeling like I'm being a crybaby - I know all of you have suffered through so much and endured and persevered - and I'm thinking what is this the start of...(groan)?? while at the same time I feel excited to be nearing answers...

Sorry to be dumping...

[KaitiUSA]

As far as false negatives go...with the complete panel done that is not likely. Some of the tests in the full panel are very specific.In fact, the tTG will take the place of biopsies for the diagnosis in kids in the near future.

To have the tests positive it clearly means there is something going on. I have heard of false negatives before but with the tests that they do that are specific I have never heard of a false positive on it.

With a biopsy the same thing can happen though...they can miss damage if there is sporadic or none.

A good option in my opinion is an Enterolab. I think even though some doctors will not accept them, it is a wonderful test to get done.

York allergy testing would not pick up on celiac because celiac is not an allergy.

You could get that done to see if there are any other foods you have a problem with.

A dietary challenge is ok if you do not need/want an official diagnosis. If you would like to be tested do not go gluten free until after. Your body will definitely be able to tell you if it likes being gluten free though.

You may want to be checked for other things that you listed as well. Those things have a connection with celiac. I have Graves disease(hyperthyroid) and my endocrinologist said she rarely sees celiacs with just celiac.

Feel free to vent anytime though..I understand it's difficult and you need people that relate to you that can talk to you and listen so whatever is on your mind just say it

[Matilda]

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[lushgreen]

Kaiti and Matilda,

Thanks for your responses. I am sure it would help me to educate myself here a little bit more, but all the information feels a little overwhelming right now, particularly in reading about people's varied experiences. It has been difficult to determine which are the specific and sensitive tests. I'm a little anxious because most of my family, of which most are physicians, are all very skeptical and discouraging - think whatever I have will be cured by a simple course of anitbiotics!

I see a lot of people here who have had inconclusive testing - how does that happen if the tTG is very specific. Also, when does one turn to Enterolab? And lastly, when is a diagnosis made of gluten sensitivity or intolerance and not celiac disease?

Any information would be much appreciated.

[Guest nini]

If the dr. does not order the full panel of tests and is only relying on one test, there is the chance that you may get a false negative. I haven't heard of any false positives. The full panel is very effective for diagnosing celiac, but keep in mind that even if you don't have celiac (YET) you may still be gluten intolerant.

[lushgreen]

Nini,

How can I ensure the doctor orders the full panel? And what constitutes it - is the five tests that Kaiti has listed? And where does the genetic test fit in, if at all? Sorry, but I'm totally ignorant here...

[KaitiUSA]

Yea, the complete panel is what I listed. It is very effective. A gene test can rule celiac out but not in. If you do not have the gene you don't have celiac but could have a gluten intolerance. If you have the gene you have predisposition to celiac so could have it.

[Matilda]

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[lushgreen]

Hi Matilda,

Thanks - that link was helpful as was what you wrote - I think I am getting a somewhat better handle on the difficulty in testing for this. I have been reading all over this board about how inconclusive testing can be, given the issue of extent of villous damage. I also see how people end up turning to Enterolab but how to interpret those results still seem unclear to me. There's a lot I have to educate myself about! But first things first - I have my first doctor's visit on Monday - let's see what my testing shows. Will keep you posted. Thanks again.

[ravenwoodglass]

Please get yourself tested, I could have written what you wrote only add ataxia, (that made everyone think I drank!), and severe arthritis. I thought only my upset stomach would go away after diagnosis, everything did. Even my hair grew back, and what is growing back is brown, not the white is was before. Times a wasting, get tested and you might get your life back.

[lushgreen]

Hi everyone,

I did get tested two days ago - waiting for the results. But I don't think my doctor ordered the full panel - only antigliadin IgA and tTg IgA - is this enough? I don't know if it would be possible to ask her to add the others now - that is if it is possible for the lab to do it...

Ravenwoodglass,

Though I would not wish this for anyone, it is still really good to know that there are others that are experiencing this same constellation of symptoms. The hair loss is bad - but I don't understand how I have not gone bald yet. I have long hair down my back that has really thinned out and I'm thinking of cutting it off in hopes that have short hair may help control some of the loss. In all, I just hope I get some resolution soon. I almost want to test positive so that I know that this is the end of the questioning. If not, it is back to wondering, wondering, what is going on...?

[Matilda]

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[lushgreen]

Hi Matilda,

Thanks for such a truly informative post. It is particularly helpful knowing about negative blood test results. But it also sucks knowing that all these procedures run the risk of being inconclusive, including a biopsy since I am on a small budget with limited insurance and since it also means having to be my own advocate with ill-informed doctors. Though the blood was drawn last week, I have yet to wait another four days before I get a verdict. In the meantime I sit in dread - of both a positive and negative blood result! Your note that "it doesn't end there" was both comforting as well as not. If the results are negative, I face living with a diagnosis of IBS and chronic fatigue syndrome or choosing to plow ahead with further testing via biopsy and Enterolab.

Thanks also for reminding me to stay on gluten till all testing is completed. It is so tempting to start now - I had already started giving my breads and flours in anticipation!

You've been a big help Matilda, even if it's not always what I want to hear, in getting my education in the imperfections of celiac testing!

[lushgreen]

Matlida - another question: How do you understand the negative blood test results you received? You so obviously have celiac disease and not just a sensitivity - could being gluten-free for just 7 days have resulted in a false negative for you?

I'm curious what leads to the failure of blood tests to detect celiac disease when EMA is supposed to be highly sensitive.