Scott Adams' Story of His Diagnosis of Celiac Disease

9 hours ago, plumbago said:

Welcome Liz. To me, it sounds a bit of a stretch to link hypertension with gluten, but use any advice you receive here just as food for thought. Looking in my book, Recognizing Celiac Disease, there is some mention of mineral deficiencies like magnesium and potassium, associated with elevated blood pressure, but again to me that seems unlikely - there is an overemphasis on vitamin and mineral deficiencies oftentimes, on boards and in forums like these, IMO. The other thing the book mentions is hyperthyroidism. And with that, yes, there is a more plausible link to high blood pressure.

Seeing you are on some immunosuppressants, have you thought about those as the culprit? I know certain corticosteroids can raise blood pressure, especially when taken long term. The mechanism is fluid retention. (Steroids can also increase blood sugar.)

You also ask if your autoimmune condition can be caused by gluten, but didn't mention what that autoimmune condition is. Personally, I do think that diet can lead or trigger autoimmune conditions, and though I am not an expert, I suspect gluten can be included in that.

Anyway, I hope others will weigh in. Good luck.

Plumbago

Oh yes, I do know that steroids can raise blood pressure which is why my doctor has put me on blood pressure meds.  My autoimmune disorder is giant cell arteritis.  I had read somewhere that gluten is implicated in high blood pressure and as I have bad side effects from the BP meds I am keen to tackle anything that might contribute to it and to the GCA which is exacerbating it.

Liz

So very grateful to find this website.  Thank you!

Thank you for sharing

On 8/2/2009 at 9:36 AM, Guest Vivian, PT said:

It is a common misconception that celiac disease is only confined to the small intestines but it is not based on the seminar I attended in the past. If he's already having problems with digestion, most likely he's starting to have the signs and symptoms of gluten sensitivity. Celiac disease is the end stage of gluten sensitivity. There are also manual therapy techniques available and the one I use is called integrative manual therapy along with NAET (Nambudripad's Allergy Elimination Technique) which could help detect where the problem is coming from. Hope this helps answer some of your questions.

Wow! I am blown away by the stories I have read on this site. And can I say “Well done”!  I joined this site because I have an amazing friend/family who I want to make Christmas lunch.  I have gluten sensitivity and had no idea that it is really a precursor to celiac.  I have had my gallbladder removed and have big problems lactose but they say I am not allergic just sensitive? So am unsure what to eat? My kids seem to be the same.  The more I read, the more I actually think this is a diet and lifestyle that more people should look at generally.  Is there any downside to or nutrient deficiency risk that could come from eating this way as a person without this disease?

First of all, please realize that gluten sensitivity being a precursor to celiac disease is a theory/suspicion but not a scientific fact. Second, celiac disease is not an allergy. It is an autoimmune disorder and I'm not sure that gluten sensitivity is actually an allergy either. These things involve different pathways in the immune system. So allergy testing may be of no use to you.

The only downside to eating gluten free is that you will miss getting  the vitamins that wheat products are fortified with. Almost all gluten free wheat substitutes contain a lot of empty calories. However, the vitamins and minerals missed by eating gluten-free that you would have gotten from fortified wheat products can be easily made up for by a well-rounded diet and supplements. I can see this being an issue only in situations where people are very poor and/or don't have plenty to eat or who have no appetite and are on the verge of undernourishment in general.

14 hours ago, Allison MacPhail said:

Wow! I am blown away by the stories I have read on this site. And can I say “Well done”!  I joined this site because I have an amazing friend/family who I want to make Christmas lunch.  I have gluten sensitivity and had no idea that it is really a precursor to celiac.  I have had my gallbladder removed and have big problems lactose but they say I am not allergic just sensitive? So am unsure what to eat? My kids seem to be the same.  The more I read, the more I actually think this is a diet and lifestyle that more people should look at generally.  Is there any downside to or nutrient deficiency risk that could come from eating this way as a person without this disease?

Hi Allison, I had my gallbladder removed years ago. The gallbladder senses an enzyme (CCK) which is put off by your stomach when fatty or foods that are hard to breakdown. The gallbladder then contracts added extra bile to the stomach to help digestion. Your digestion tract will play games with you for some time after it is removed, but should level out. I stayed away from dairy, greasy food, tomatoes, etc. I also always rolled with a TP roll. You never know when.

There is a lot of good information here. Gluten can negatively affect the body in different ways, with celiac likely being the worst in how you can develop chronic illnesses over time due to damaged villi. To properly test for celiac, you must conduct a gluten challenge, so be aware of that if you think you might want to be tested.

Not advice but things I've learned:

1. Gluten-free food is not really gluten-free. Try to get 'Certified Gluten-Free' if possible. If Oats are your thing, know most are contaminated, so research.

2. Not all doctors are the same when it comes to be knowledgeable about gluten conditions. Research and ask a lot of questions. If they cannot help you, might be best to look for another provider or specialist just for your issues as it relates to nutrition and gastro.

3. You are not alone and there are a number of resources and groups to help guide you. The symptoms and conditions vary, but the problem here is the same - gluten (which can vary between countries in how the produce or attempt to modify it)

4. Medications are not regulate to disclose their fillers could contain or be contaminated with gluten. Gluten can also be in cosmetics, shampoos, etc.  Scary!

Good luck!

CCK Open Original Shared Link

With oats, there is a strong suspicion that cross contamination with gluten-containing grains is not the only issue. Some will tell you that about 10% of celiacs react to the oat protein, avenin. 

I have a very complicated time with oats.  Before I was first diagnosed and went on a gluten-free diet, I ate them for England.  Soon after diagnosis I reintroduced them (the pure variety) and it felt like the area just under my ribs, where the stomach is, was on fire, after a day or so after consuming them, so I stopped eating them.  I tried to reintroduce them from time to time again and again, on my nutritionist's recommendation, but the same thing would happen.  Now, eight years on from diagnosis, I tried to introduce them again this spring. After a few weeks this time, not days, that burning pain came back, although interestingly my TTG readings did not go up.  Oats seem to give me the burning stomach that a glutening gives me, but not the associated chills or vomiting that a glutening would give me, and they do not put up my TTG levels. 

I find it really bizarre that this happens, that I could eat them before I was diagnosed, but can longer do so, but I think I just have to conclude that they aren't for me anymore.   I must be one of the minority that can't deal with them.🙁

12 hours ago, trents said:

With oats, there is a strong suspicion that cross contamination with gluten-containing grains is not the only issue. Some will tell you that about 10% of celiacs react to the oat protein, avenin. 

Interesting. I'll need to read up on that. I wonder if another autoimmune is at play here.
Generally peaking, oats are sometimes prepared in the same vats used for gluten-containing products or stored with them. If you are an oats fan, there are a few out there we hear good reports on, few being the operative word there.
Do you homework and stick to those brands that go the extra mile.

Just Found Out You Do Not Outgrow Celiac Disease - 50 Years of Bread

Hi. I am so sorry that you have had to go through such an ordeal, Scott. I think the fact that there are so many possible symptoms of celiac that are also symptoms of other diseases, and that many celiacs do not have obvious symptoms contributes to delayed diagnosis.

I am of retirement age, was diagnosed with celiac as a child, was told I would outgrow it, and from my teens have been eating bread (50 years), and I just found out this morning that one does not outgrow the disease!

And now I am paying the price.

Apparently celiac was originally thought to be a disease of childhood only. My dad was a conscientious family doctor and my mother was a nurse.  We all agreed I had celiac disease. When I switched from potato bread, etc, to regular bread in my teens and had no obvious symptoms, I figured my celiac was over with. But now I am having all sorts of long-term symptoms pointing to celiac  and the effects of malabsorption of nutrients.

I am not very happy now knowing that I have been destroying my small intestine for half a century. But I hope that I can be everybody's guinea pig at this point. By the way, my most recent meal was two slices of "nutritious" whole wheat bread. I don't tend to have digestive symptoms, so this helps keep the illusion going. Following the meal, I was reading about celiac disease on the internet. So here we go.

Symptoms Suggesting Malabsorption of Nutrients

1) Weak Teeth. They continue to wear down. Sometimes when I grit my teeth during strong physical exertion, bits of teeth break off in my mouth. This points to weak teeth caused by malabsorption of nutrients. One of my front teeth looks grayish because it is so thin and translucent. My teeth keep eroding and I experience changing patterns of ridges behind my teeth. Now that I know that celiac does not go away, it could be the reason for all this.

2) Weak Bones. Twice in the past two years I leaned to my left reaching for an item while sitting in my desk armchair, and then one of my ribs made a funny click sound as it pressed against the arm of the chair, and the rib was sore for a week or so. I may have cracked it.

3) Weak Fingernails. I can easily flex my fingernails, including my thumbnails. A few weeks ago while using my thumbnail to rub something off a hard surface, the nail broke and left a quarter-inch-across indention of about an eighth of an inch down from the edge of the nail. That is a large missing piece.

4) Heart Arrythmia. About 10 years ago, I was having episodes of atrial fibrillation where I would actually have to lay on the floor curled up for several minutes because I was so weak. I was told that if it is only episodic, then this type of arrythmia is harmless. I would tend to disagree. I once was given a medication at the hospital to normalize the rhythm, and when I got the medical report, it also showed in the tests a low magnesium level. The doctors did not mention the magnesium level to me, but magnesium is a very important nutrient for heart health, especially for avoiding arrythmias. I started supplementing with up to 500 mg per day and this has helped a lot.

Why I Didn't Realize I Still Had Celiac

1) It was originally thought that celiac was only a childhood disease.

2) I don't tend to have any obvious digestive symptoms.

3) I otherwise have been physically active, possibly masking celiac.

My most recent job was moving about 300 rocks to decorate a ditch. My employer said she couldn't get anyone else in the nice neighborhood to do any physical labor. Yesterday I road a heavy mountain bike with 3 inch wide knobby tires 10 miles to a conservation area, rode about a mile through a muddy trail, hiked through the hills in hiking boots, felt great, and then rode home again and wasn't tired. There was no one else hiking in the park. All that may be great, but it makes you think everything is wonderful, when overall, things really aren't.

No more bread for me, but at least it was nice and soft for my weak teeth.

Thanks for reading this.

1 hour ago, lovetolove said:

Just Found Out You Do Not Outgrow Celiac Disease - 50 Years of Bread

Hi. I am so sorry that you have had to go through such an ordeal, Scott. I think the fact that there are so many possible symptoms of celiac that are also symptoms of other diseases, and that many celiacs do not have obvious symptoms contributes to delayed diagnosis.

I am of retirement age, was diagnosed with celiac as a child, was told I would outgrow it, and from my teens have been eating bread (50 years), and I just found out this morning that one does not outgrow the disease!

And now I am paying the price.

Apparently celiac was originally thought to be a disease of childhood only. My dad was a conscientious family doctor and my mother was a nurse.  We all agreed I had celiac disease. When I switched from potato bread, etc, to regular bread in my teens and had no obvious symptoms, I figured my celiac was over with. But now I am having all sorts of long-term symptoms pointing to celiac  and the effects of malabsorption of nutrients.

I am not very happy now knowing that I have been destroying my small intestine for half a century. But I hope that I can be everybody's guinea pig at this point. By the way, my most recent meal was two slices of "nutritious" whole wheat bread. I don't tend to have digestive symptoms, so this helps keep the illusion going. Following the meal, I was reading about celiac disease on the internet. So here we go.

Symptoms Suggesting Malabsorption of Nutrients

1) Weak Teeth. They continue to wear down. Sometimes when I grit my teeth during strong physical exertion, bits of teeth break off in my mouth. This points to weak teeth caused by malabsorption of nutrients. One of my front teeth looks grayish because it is so thin and translucent. My teeth keep eroding and I experience changing patterns of ridges behind my teeth. Now that I know that celiac does not go away, it could be the reason for all this.

2) Weak Bones. Twice in the past two years I leaned to my left reaching for an item while sitting in my desk armchair, and then one of my ribs made a funny click sound as it pressed against the arm of the chair, and the rib was sore for a week or so. I may have cracked it.

3) Weak Fingernails. I can easily flex my fingernails, including my thumbnails. A few weeks ago while using my thumbnail to rub something off a hard surface, the nail broke and left a quarter-inch-across indention of about an eighth of an inch down from the edge of the nail. That is a large missing piece.

4) Heart Arrythmia. About 10 years ago, I was having episodes of atrial fibrillation where I would actually have to lay on the floor curled up for several minutes because I was so weak. I was told that if it is only episodic, then this type of arrythmia is harmless. I would tend to disagree. I once was given a medication at the hospital to normalize the rhythm, and when I got the medical report, it also showed in the tests a low magnesium level. The doctors did not mention the magnesium level to me, but magnesium is a very important nutrient for heart health, especially for avoiding arrythmias. I started supplementing with up to 500 mg per day and this has helped a lot.

Why I Didn't Realize I Still Had Celiac

1) It was originally thought that celiac was only a childhood disease.

2) I don't tend to have any obvious digestive symptoms.

3) I otherwise have been physically active, possibly masking celiac.

My most recent job was moving about 300 rocks to decorate a ditch. My employer said she couldn't get anyone else in the nice neighborhood to do any physical labor. Yesterday I road a heavy mountain bike with 3 inch wide knobby tires 10 miles to a conservation area, rode about a mile through a muddy trail, hiked through the hills in hiking boots, felt great, and then rode home again and wasn't tired. There was no one else hiking in the park. All that may be great, but it makes you think everything is wonderful, when overall, things really aren't.

No more bread for me, but at least it was nice and soft for my weak teeth.

Thanks for reading this.

 

Hi lovetolove, Celiac Disease strikes any time. Mine came when I got off mother's milk and got on cow's milk. I was always crying in photos and looked bloated. My aunt got Celiac around her 40's and her sister, my mom, got Celiac in her 70's. I got Celiac once I was off mom's milk and put on cow's milk. I've been dealing with this since a toddler and I'm in my 60's. I guess I will never heal. That's a long time to have a disease you don't know you have and it's SILENT! If it wasn't silent I may of had a chance to correct this mess. Life is hard, what can I tell y'all? We all have our trials and tribulations to deal with and mine has been a difficult struggle. At least I know where I got my Celiac from...my mom's side, but that's no consolation. Prayer helps and Knitty Kitty has been a God-Send. She's a Gem! Dorothy Rockwell 

3 hours ago, lovetolove said:

Just Found Out You Do Not Outgrow Celiac Disease - 50 Years of Bread . . .

Apparently celiac was originally thought to be a disease of childhood only. My dad was a conscientious family doctor and my mother was a nurse.  We all agreed I had celiac disease. When I switched from potato bread, etc, to regular bread in my teens and had no obvious symptoms, I figured my celiac was over with. But now I am having all sorts of long-term symptoms pointing to celiac  and the effects of malabsorption of nutrients. . . .

No more bread for me, but at least it was nice and soft for my weak teeth.

Thanks for reading this.

 

A common story around here I'm afraid. Up until about 25 years ago it was thought the incidence of celiac disease was about 1 in 5000. Now we know it's more like 1 in 100. We have learned a lot about celiac disease in the past 25-30 years.

I hope you realize you need to not just eliminate bread and pasta but to aim for a diet completely free of wheat/barely/rye - the gluten containing grains. It is especially true that wheat and barely are found in many processed food products and masked by terminology, e.g. "malt flavoring," and can be found in medications and supplements as a filler or binder. They are often found in food products you would never expect like canned tomato soup (almost all canned soups, actually) and soy sauce. "Spices" and "natural flavorings" are sometimes sources of gluten. It requires a lot of education and diligence. You will need to become a food detective. The hardest thing to deal with is cross contamination ("CC") where a food will be "naturally gluten free" but acquire gluten from coming in contact with gluten containing grains during growing, storage, transport, processing, preparation and handling. Those last two make eating out at restaurants very risky. If you eliminate only the major sources of gluten in your diet you will keep the inflammation of the small bowel lining smoldering and prevent healing.

Edit: But just for the sake of clarity lovetolove, have you been officially diagnosed with celiac disease recently or when you say, "I just found out that you don't outgrow celiac disease was that the result of your research or of recent testing? When you were diagnosed as a child, how was that done? Do you have any info about that? There are now pretty definitive medical tests that may not have been available back then.