Why Now?

[KahleFamily]

My doctor has told me I may have celiac disease (amoung a lot of other things). I occassionally have allergic reactions, but I don't know what to, Constant diarhea and constipation, constant headaches (I have a dull one now which becomes severe every evening lasting weeks), hair loss, abdominal pain, etc. I just tell everyone that I occassionally feel like I am in an Alien movie and an alien is going to burst out of my stomach.

Anyway, my husband doesn't believe that it could be Celiac disease because it is hereditary and I have just been getting these symptoms in the last couple years, and progressively worse the last few months. He says "if it's hereditary, why are you just getting it now?"

Is there a reason it may just "suddenly pop up"?

[GottaSki]

Here's a link to a good description of Celiac Disease that answers your question.

Open Original Shared Link

Hope this helps, Lisa

[tarnalberry]

An analogy that may be easier for him to understand -

rheumatoid arthritis is also genetically linked. but (outside of juvenile RA) it usually doesn't manifest until the mid-20's.

a good portion of breast cancer is genetically linked. but a woman doesn't develop breast cancer in infancy - it's later in life.

the same is true for high blood pressure (some cases), schizophrenia, MS, lactose intolerance, and NUMEROUS other things.

It's not that having a particular version of a gene makes you automatically have some condition (though this is true in a small number of cases - like cystic fibrosis), but rather that it makes it possible (and more likely, in other cases) to develop a condition if the environmental triggers are right.

For instance, it is known that there are some genes that predispose one to becoming an alcoholic. But, if a person with a family history of alcoholism opts to not ever start drinking, they're not going to develop alcoholism because they have no triggering event (the consumption of alcohol). This might seem like a kind of "obvious" example, but there is really a lot of chemistry involved in triggering the potential for alcoholism that goes above and beyond "just avoiding".

[carynanne]

My doctor has told me I may have celiac disease (amoung a lot of other things). I occassionally have allergic reactions, but I don't know what to, Constant diarhea and constipation, constant headaches (I have a dull one now which becomes severe every evening lasting weeks), hair loss, abdominal pain, etc. I just tell everyone that I occassionally feel like I am in an Alien movie and an alien is going to burst out of my stomach.

Anyway, my husband doesn't believe that it could be Celiac disease because it is hereditary and I have just been getting these symptoms in the last couple years, and progressively worse the last few months. He says "if it's hereditary, why are you just getting it now?"

Is there a reason it may just "suddenly pop up"?

Hi. To add to the website answer, in short: With autoimmune diseases (I have a thyroid one), there are 2 factors to consider: genes and the environment. You have to have the genes to carry the risk of an autoimmune disease, but something in the environment has to trigger it. The trigger for celiac is unknown. If you have it, you've carried a propensity for it your entire life, but for some unknown reason your body didn't start responding to gluten until recently. I wasn't diagnosed with Hashimoto's until I was 27. People with lupus often don't have symptoms untl they are much older than that. There are just things we don't know about what triggers autoimmune diseases -- when they figure all that out, maybe we'll have a much healthier populace. But it is very common to go your entire childhood and into adulthood with no symptoms and then suddenly develop them. I understand childbirth to be a major autoimmune trigger, but I'm sure it's not the only one!

[lovegrov]

First, somebody in your family might have had celiac in the past but either it was never diagnosed as such or the symptoms were so mild the person who had it never needed to be diagnosed. My father had such mild symptoms nobody ever considered celiac. He was diagnosed at age 70; I was diagnosed at 46.

Second, it's very possible people in your family carried the gene(s) but nothing ever "triggered" them to produce celiac. Triggers are thought to include stress or a severe illness but nobody truly knows why some with the gene(s) develop celiac and others don't.

richard

[Mtndog]

I wanted to respond because I am 42 and my 5 year old niece asked me, "When I get old like you, will I not be able to eat cookies and pizza and donuts?"

You've gotten some good responses here but I wanted to add that in some cases there can be multiple triggers. I think I had minor issues with gluten my whole life- I was always constipated, I always felt "too full" after eating pancakes, bread with dinner, etc. Finally, when I was 35 I underwent two traumatic things- my mom passed away suddenly and three months later I got Lyme disease which went undiagnosed for a long time.

I think the physical and emotional stress I was under was what triggered mine. For some people, it's as "simple" as getting a virus, getting pregnant or even a minor surgery.

[Amyleigh0007]

My son was the first person ever to be diagnosed with Celiac on both sides of the family. I didn't even know what Celiac was prior to his diagnosis. My husband also questioned my symptoms and said my issues might be sympathy pains for our son. I have always had minor stomach problems but it wasn't until my 2nd C-section in August of 07 that my minor problems blossomed into major, life altering problems. I had no idea what was causing my sudden onset of problems. Everyone, including myself, chalked it up to stress. I began making a connection between feeling horrid after eating whole wheat pasta but I really didn't think much more about it. When my son was diagnosed in March of 08 I finally realized that I might have Celiac too and sure enough I do! I am certain that my 2nd C-section was my trigger. Genetic testing was so helpful in my situation since I had been gluten free for a year and was not going to undergo a challenge.

[Mary Blackburn]

I just wanted to add my 2 cents worth here. I was "officially" diagnosed with Celiac Sprue by a gastroenterologist at the age of 28. Up to that point in my life, if anyone would have asked I would have said no I didn't have any symptoms at all. I was very thin my whole life, had what was probably dermatitis herpetiformis on my hands and ankles, but was told by a dermatologist that it was flea bites, when she found out I had a dog.

No one else in my family has every been diagnosed with Celiac, but I suspect that my maternal grandmother developed it in her late 80's. She lived to be 91, but the last 4 to 5 years of her life she complained of stomach aches, diarrhea, headaches, rhematoid arthritis, and other symptoms I can't remember right now off the top of my head.

I had been diagnosed in 1986, a few years later is when she started showing the symptoms. My husband and I tried to get her to go on a gluten free diet, because she always felt better when she stayed at my house and ate gluten-free, but she just couldn't get the idea that something (bread) she had made from scratch and ate her whole life could be making her sick.

My symptoms among others, was profuse diarrhea and basically starving to death, and I firmly believe that my grandmother, had she listened to me, would not have wasted away to nothing due to profuse diarrhea at the age of 91.

[momxyz]

I figure my itch rash was like a 50th birthday present!

Celiac's or anything related to it was the furthest thing from my mind last fall, when I got this very itchy rash that didn't go away..... it wasn't till my daughter started having problems that could have a connection to gluten intolerance that it ever dawned on me that I could be affected too...

I did not pursue an official diagnosis of DH, but when I went gluten free, the rash began to resolve...

[Vollaire]

My experience is much like yours. Except I was diagnosed with rheumatoid Arthritis in Feb of 2008. My symptoms began the Friday after Thanksgiving. My Dr believes it was aquired through a viral infection. Both of my children had been home with fevers 2-3 weeks prior to my symptoms(perfect incubation period).

No one in my immediate or extended family on either my mother's or father's side has RA or celiac disease. I was treated with the standard array of medication. They made me feel horrible and my pain only increased as the months wore on. I decided to get a 2nd opinion and was told I had both RA and fibromyalgia, but this dr was talking to me like I was already disabled. Tired of Dr's treating me like my disease had already won, the myriad of medications supported by over the counter medications to battle side effects and not being able to fully enjoy my family, I stopped taking all my medications and went for a 3rd opinion.

Dr. Lisbeth Roy, God bless her, is a osteopathic doctor and fully supported my desire to be without prescriptions, immediately removed dairy and later gluten from my diet. The results have been wonderful. 75-80 percent of my pain and discomfort has been relieved. The rest is likely do to a busy lifestyle with little time to rest and recover from activity. I know immediately if something I have eaten is contaminated. The pain can be excrutiating both gastrointestinal and joint (they will swell up horribly and the aches are jaw to toes). My point, my symptoms happened as a result of a viral infection that completely changed how my body handles stimuli, quite literally, over night. It just took a year + to find a Dr. who recognized my needs and was happy to work with me on a healthy body instead of pumping me full of prescriptions.

[debmidge]

My doctor has told me I may have celiac disease (amoung a lot of other things). I occassionally have allergic reactions, but I don't know what to, Constant diarhea and constipation, constant headaches (I have a dull one now which becomes severe every evening lasting weeks), hair loss, abdominal pain, etc. I just tell everyone that I occassionally feel like I am in an Alien movie and an alien is going to burst out of my stomach.

Anyway, my husband doesn't believe that it could be Celiac disease because it is hereditary and I have just been getting these symptoms in the last couple years, and progressively worse the last few months. He says "if it's hereditary, why are you just getting it now?"

Is there a reason it may just "suddenly pop up"?

Dear Kahle Family: My husband enjoyed great health until his celiac was trigged at age 27 and life certainly changed for him. Again, he had he potential for the disease in him all those years, but a blood infection brought it to the forefront. He is not aware of any of his parents or ancestors as having celiac but he's certain his sister has it but won't get tested. My husband agrees with your Alien movie analogy, he also says his guts felt like a washing machine on the wash cycle at night; but since being gluten free he doesn't feel the washing machine any more. Every now and then he'll get some light pain (possible cross contamination of foods).

[esammarie]

Thank you all for sharing your stories. They really calm me and help me feel less frightened and sad. Though I do feel sad. I developed two years ago what last month was diagnosed as dermatitis herpetiformis a few months after having the Nissen Fundoplication surgery to correct horrible acid reflux. That procedure was much needed and made a world of difference - much fewer asthma episodes and fewer sinus infections.

Then the weird rash. I Googled "knee and shoulder rash" and it returned nothing of value. So I tried "Knee and elbow and shoulder rash" and still nothing. It would come and go, or so it seemed. It got much worse when I traveled and now I know why. When traveling I ate much more gluten then when at home. Great microbrews, regional cuisine, so yummy but I would itch and itch and so I went crazy thinking it was the shampoo, the conditioner, the soap, the skin lotion......it was none of those things, but I didn't know that!

Now I do. Positive biopsy of lesion and positive biopsy of peri-lesional skin returned the DH diagnosis, which was a huge shock. Then they took six vials of blood which returned very positive results for all the markers. That's enough for me but no, I have to continue to consume gluten, which is making me very sick, in preparation for endoscopy and biopsy on Friday. I've had many endoscopic exams - when I was diagnosed with IBS plus fibromyalgia two decades ago, when I was being diagnosed with GERD and then studied to discover the GERD was "structural," blah blah blah.

This celiac disease reality which isn't reality until I suffer some more really will be fine - the "preparation" is what sucks.

I must have had the markers....just didn't know it. My sister just was diagnosed with Sjogren's. She tested negative for the celiac markers but it's all related. One disease is related to another. It doesn't have to be one-to-one. It could be diagonal or cross-town.

Peace and peace and good health to you all.

[momxyz]

Thank you all for sharing your stories. They really calm me and help me feel less frightened and sad. Though I do feel sad. I developed two years ago what last month was diagnosed as dermatitis herpetiformis a few months after having the Nissen Fundoplication surgery to correct horrible acid reflux. That procedure was much needed and made a world of difference - much fewer asthma episodes and fewer sinus infections.

Then the weird rash. I Googled "knee and shoulder rash" and it returned nothing of value. So I tried "Knee and elbow and shoulder rash" and still nothing. It would come and go, or so it seemed. It got much worse when I traveled and now I know why. When traveling I ate much more gluten then when at home. Great microbrews, regional cuisine, so yummy but I would itch and itch and so I went crazy thinking it was the shampoo, the conditioner, the soap, the skin lotion......it was none of those things, but I didn't know that!

Now I do. Positive biopsy of lesion and positive biopsy of peri-lesional skin returned the DH diagnosis, which was a huge shock. Then they took six vials of blood which returned very positive results for all the markers. That's enough for me but no, I have to continue to consume gluten, which is making me very sick, in preparation for endoscopy and biopsy on Friday. I've had many endoscopic exams - when I was diagnosed with IBS plus fibromyalgia two decades ago, when I was being diagnosed with GERD and then studied to discover the GERD was "structural," blah blah blah.

This celiac disease reality which isn't reality until I suffer some more really will be fine - the "preparation" is what sucks.

I must have had the markers....just didn't know it. My sister just was diagnosed with Sjogren's. She tested negative for the celiac markers but it's all related. One disease is related to another. It doesn't have to be one-to-one. It could be diagonal or cross-town.

Peace and peace and good health to you all.

I'm not sure I understand why you are having to ontinue to eat gluten and get the endoscopy and biopsy? I thought if you had onfirmed DH that pretty much sealed a diagnosis of Celiac's.....

[esammarie]

I'm not sure I understand why you are having to ontinue to eat gluten and get the endoscopy and biopsy? I thought if you had onfirmed DH that pretty much sealed a diagnosis of Celiac's.....

I don't understand it, either, but the doctor says I have to do this. I read and read and it seemed that the second biopsy of peri-lesional skin that confirmed DH by immunofluorescence, which it did, plus all the positive blood tests (all very positive and with high titers) that it was a done deal. The doc wants the trifecta - so I have to poison myself, they say.

What was your experience?

Is this wrong or as awful as it seems? I want no room for question - the skin biopsy plus blood tests seemed positive enough.

Advice?

[nasalady]

I don't understand it, either, but the doctor says I have to do this. I read and read and it seemed that the second biopsy of peri-lesional skin that confirmed DH by immunofluorescence, which it did, plus all the positive blood tests (all very positive and with high titers) that it was a done deal. The doc wants the trifecta - so I have to poison myself, they say.

What was your experience?

Is this wrong or as awful as it seems? I want no room for question - the skin biopsy plus blood tests seemed positive enough.

Advice?

People with DH frequently have negative intestinal biopsies. Most doctors feel that positive skin biopsies for DH plus positive bloodwork are sufficient.

First, from the National Institute of Health (a government website - Open Original Shared Link

Dermatitis herpetiformis (DH) is an intensely itchy, blistering skin rash that affects 15 to 25 percent of people with celiac disease.3 The rash usually occurs on the elbows, knees, and buttocks. Most people with DH have no digestive symptoms of celiac disease.

DH is diagnosed through blood tests and a skin biopsy. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to a gluten-free diet and recur if gluten is added back into the diet. The rash symptoms can be controlled with antibiotics such as dapsone. Because dapsone does not treat the intestinal condition, people with DH must maintain a gluten-free diet.

Please be aware that there are plenty of false negatives in biopsies....my favorite analogy to the biopsy process is the following:

A negative biopsy really doesn't prove much.

A number of samples are taken from the lining of the upper small intestine. The number is usually rather small. The damage may be spotty in many cases.

An analogy which may help understand the accuracy of the biopsy follows. It is graphic, but effective.

Imagine that your front lawn is 25 feet wide and 10 feet deep. That is 250 square feet of grass. Now imagine that you go onto your lawn and choose, at random, 12 3-inch square samples. In none of those samples, which total less than 1 square foot out of 250, do you find any dog feces. Well, then, you can declare that your lawn is free of dog sh!t, can't you? Of course you can't.

A negative on the biopsy does not prove that there is no damage, it only means that they did not find any in the small sample. The fewer samples taken, the more likely it is that damage will be missed. Most times a lot less than twelve samples are taken, and they are all taken from within the first few inches of the small bowel.

If perchance your biopsy comes back negative, don't let it throw you.....you definitely have celiac disease! Anyone with DH has celiac (Open Original Shared Link) It may be that the damage is patchy and isn't far enough advanced to show in the samples that were taken.

If it were me, I would cite the NIH website to the doctor and refuse the biopsy; then I would go gluten free immediately! But it's definitely your decision....only you know what's right for you.

Good luck!

JoAnn

[brigala]

In hindsight, I can see that I probably had some very minor symptoms my entire life (minor, unexplained health annoyances that never cleared up until I went gluten-free). I started gaining weight rapidly when I went through my divorce, and attributed it to a change in lifestyle, but honestly my lifestyle had never made any difference in my weight before so now I question whether that was the real cause. Over the course of a year I went from a healthy weight to 60 lbs overweight. Not long after my weight topped out (about a year after my divorce began) I was prescribed birth control pills to get my excessive menstrual cramps under control. That was when the Celiac symptoms hit me in force. The main thing I noticed was that I was no longer able to eat pizza without running to the bathroom for 30 minutes or so of horrible cramping Big D. I was sure it was the BCP that were making me sick, and I quit it, but the symptoms never cleared up. It was about 6 or so years later that a friend of mine who is a RN and also has Celiac talked me into trying a gluten-free diet.

Everyone says The Pill couldn't have been what triggered my Celiac symptoms, but I swear the symptoms started within about 48 hours of starting that damn pill. My midwife tells me that she thinks it was the straw that broke the camels back (my words, not hers) -- that my body had too much stress and the pill was a final stressor that put me over the edge and caused the Celiac to trigger.

So... yeah, you can definitely get all the way into adulthood with no symptoms and then have a sudden onset of Celiac. It happens all the time.

[brigala]

I don't understand it, either, but the doctor says I have to do this.

You do not have to do this. You have the right to refuse any and all medical procedures if you want to. If I were you, I would not submit to an invasive procedure once I had a definitive diagnosis (which I believe you already have). If you want a diagnosis in your medical chart and your doctor refuses to give it to you without an endoscopy, it probably wouldn't be difficult for you to take your current lab results to another doctor for a 2nd opinion and get your diagnosis that way.

There ARE some advantages to having the endoscopy, however. Getting a "baseline" of how much damage has been done to your intestines and comparing that to a follow-up endoscopy in 6 months or a year and then once in a while after that may help you track your healing and progress.

Personally, I don't think it's worth it, but it may be your doctor's reasoning.

[lovegrov]

If you have DH (I did, but people didn't know that then), you have celiac. Period. No other tests are really necessary UNLESS your doctor is afraid there's also something else going on.

richard

[KahleFamily]

Holy cow! Thank you everyone for all the feedback!

I have been increadibly stressed the last few years, and when I think about it, a lot of what has been happening to me started when I was pregnant with my daughter three years back.

Thanks for the insight, everyone. This has been very helpful.

[KahleFamily]

Acctually, now that I think about it, it started three years before my pregnancy with my daughter. When I went into labor with my Son I broke out in to a rash which started on my knees and butt, but then it moved all over my legs, stomach and arms. The doctors decided it was an allergic reaction (I must say, I had an amazing delivery doctor, but the rest of them were aweful) and they just threw a bunch of medicine at it.

[esammarie]

People with DH frequently have negative intestinal biopsies. Most doctors feel that positive skin biopsies for DH plus positive bloodwork are sufficient.

First, from the National Institute of Health (a government website - Open Original Shared Link

Dermatitis herpetiformis (DH) is an intensely itchy, blistering skin rash that affects 15 to 25 percent of people with celiac disease.3 The rash usually occurs on the elbows, knees, and buttocks. Most people with DH have no digestive symptoms of celiac disease.

DH is diagnosed through blood tests and a skin biopsy. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to a gluten-free diet and recur if gluten is added back into the diet. The rash symptoms can be controlled with antibiotics such as dapsone. Because dapsone does not treat the intestinal condition, people with DH must maintain a gluten-free diet.

Please be aware that there are plenty of false negatives in biopsies....my favorite analogy to the biopsy process is the following:

If perchance your biopsy comes back negative, don't let it throw you.....you definitely have celiac disease! Anyone with DH has celiac (Open Original Shared Link) It may be that the damage is patchy and isn't far enough advanced to show in the samples that were taken.

If it were me, I would cite the NIH website to the doctor and refuse the biopsy; then I would go gluten free immediately! But it's definitely your decision....only you know what's right for you.

Good luck!

JoAnn

Thanks for the advice! It seems strange to have to suffer towards a biopsy when the blood work and the skin biopsies are pretty clear - there's no doubt about it. I am thinking of canceling the biopsy, especially since it's not foolproof and it has some risk. I just want to feel better! As soon as the second skin biopsy with immunofluorescence came back with the diagnosis of DH, I started the gluten-free diet. I was one week into it and my skin really cleared up. Then the blood tests came back with the positive markers and high titers so my Primary Care DR. said I should see the GIist, who immediately said I had to go back on a regular diet and schedule the endoscopy and small intestine biopsy. That was last week and my DH rash immediately returned and my insides just feel like it's on fire - either it's diarrhea or the opposite and I am so frustrated. I am thinking of following your advice. Thank you!

[esammarie]

Acctually, now that I think about it, it started three years before my pregnancy with my daughter. When I went into labor with my Son I broke out in to a rash which started on my knees and butt, but then it moved all over my legs, stomach and arms. The doctors decided it was an allergic reaction (I must say, I had an amazing delivery doctor, but the rest of them were aweful) and they just threw a bunch of medicine at it.

To KahlelFamily - that rash sounds definitely like DH. I am so sorry you've had to suffer like this! Did they tell you to try corticosteroid cream?

[lovegrov]

While endoscopies are generally safe, my father suffered a punctured bowel during his. Ended up in the hospital for days.

richard

[KahleFamily]

To KahlelFamily - that rash sounds definitely like DH. I am so sorry you've had to suffer like this! Did they tell you to try corticosteroid cream?

They prescribed a cream, I do not recall what it was, and they gave me an oral prescription as well.

It keeps coming back in the last year (along with all the other symptoms I have been having) especially on my left knee and my arms. I hadn't really known that this was a gluten intollerance issue until the last few weeks. I will have to keep an eye on it.

[tunibell]

My symptoms showed up out of the blue after my second daughter was born (at age 34). I never had a single issue (digestive or otherwise) until I began feeling a dull, tight ache right between my ribs. I was diagnosed with celiac three months later.