Question

[VinnieVan]

Hi, brand new here! When I was a baby, I was nursed exclusively until I was 10mo old. My mother introduced a few foods, some of which had gluten. I became very ill and she had no idea why. The doctor she took me to told her I had “Anglo Saxon disease and could not eat any gluten.” He also told her I would likely never walk and not develop normally. I’m 71, very healthy and I walk!! Has anyone ever heard celiac called that? I never eat gluten. If some slips by me, I know within a few minutes. It’s horrible, as all of you know! Anyway, thank you for letting me be here! Let me know if anyone else has ever heard celiac disease called Anglo Saxon disease! 

[trents]

Welcome to the forum, @VinnieVan!

No, never heard it called that. What was the physician's racial/ethnic profile? IIRC, The connection between gluten and celiac disease was made during the WW2 era in Holland when the Germans blockaded a region along the Rhine River and the local populace did not have access to wheat flour. A local physician began to notice that some of his patients who had always been unexplainably sickly began to thrive. That's a pretty "white" area. Also, for many years, it was thought that celiac disease was largely confined to those of European descent but we know better now. That likely was a product of what people groups had access to healthcare rather than some ethnic/racial phenomenon. As healthcare has become available on a more worldwide basis we have seen that celiac disease is certainly not confined to those of European ancestry. It has become very common in India, for instance.

[VinnieVan]

Thank you for your response, Trents. I was only 10mo old at the time, so I don’t know anything about the doctor other than he was in Portland, Oregon. I assume, given it was 1954, that he was white, but I can’t be sure. We didn’t live in Oregon. Having this “issue” was never a big deal as I remember. As an older child, teen and young adult, I ate some breads - rye, sourdough, spelt. No pasta, baked goods, pizza or breaded meats. That said, I was extraordinarily thin. Since my 20’s I’ve been totally gluten free, so nearly 50 years. I am very cautious and eat really well. Are you a celiac? How has it been for you?  Again, thank you for responding. 

[trents]

I am a celiac, officially diagnosed almost 25 years ago but I have laboratory evidence that the onset was at least 13 years prior to that when my liver enzymes became mildly but persistently elevated and there was no other explanation. My GI symptoms were relatively minor and back then they were only looking for classic GI symptoms when considering a diagnosis of celiac disease. My PCP said, "I don't know why your liver enzymes are elevated. Maybe that's just the way you are." Well, that wasn't a good enough answer and the liver is a pretty important organ so I took it upon myself to schedule a GI consult. I should mention that my iron stores were also beginning to drop out of normal range and some other labs were getting out of whack. At the time I was employed as a chaplain by a healthcare system and part of my benefit package was annual CBCs and CMPs so it was easy for me to track lab values. Right away the GI doc tested me for celiac disease and I was positive. But by the time I got diagnosed at age 50 or so and started the gluten free diet I had developed osteopenia and kyphosis of the upper spine. Within three months of going gluten free my liver enzymes had normalized. But it was too late for the bones and my total protein and albumin continue a little below normal. Not sure what that's about.

I see from the bio summary below your avatar that you are in Virginia. That is where I was born and raised.

Edited April 1 by trents

[Scott Adams]

13 hours ago, VinnieVan said:

Hi, brand new here! When I was a baby, I was nursed exclusively until I was 10mo old. My mother introduced a few foods, some of which had gluten. I became very ill and she had no idea why. The doctor she took me to told her I had “Anglo Saxon disease and could not eat any gluten.” He also told her I would likely never walk and not develop normally. I’m 71, very healthy and I walk!! Has anyone ever heard celiac called that? I never eat gluten. If some slips by me, I know within a few minutes. It’s horrible, as all of you know! Anyway, thank you for letting me be here! Let me know if anyone else has ever heard celiac disease called Anglo Saxon disease! 

Yes, in the mid-20th century, including the 1950s, some doctors and researchers referred to celiac disease as a condition primarily affecting people of European, particularly Northern European, descent. The term "Anglo-Saxon disease" was sometimes used in medical literature and discussions to describe celiac disease, based on the observation that it appeared to be more prevalent among people of Anglo-Saxon ancestry compared to other populations.

This terminology stemmed from early epidemiological studies suggesting that celiac disease was more common in individuals of Northern European descent, while being less frequently diagnosed in other ethnic groups. However, this was likely due to differences in genetic predisposition (such as the prevalence of HLA-DQ2 and HLA-DQ8 genes), dietary habits, and diagnostic awareness rather than an absolute racial or ethnic exclusivity.

While the term "Anglo-Saxon disease" is outdated and no longer used, historical references to it can be found in older medical texts and discussions about the geographic and genetic distribution of celiac disease. 

[VinnieVan]

Thank you so much! This is helpful, just to know. Over the years, I’ve seen the scope and understanding of the disease broaden. In some ways, I think it’s remarkable a doctor in Oregon way back then could diagnose a baby he’d never met so quickly. I wish I’d asked more questions!! 

[fritz2]

I'm 70, had gut issues my whole life.  15 years ago my grandchild was diagnosed with celiac.  Since I had a constant either constipation or diarrhea and what the doctors thought was fibromyalgia and other issues I decided to see what happens if I quit gluten.  I got a lot better.  BTW, 30 years ago I had head & neck cancer, the radiation destroyed my thyroid.  I suffer from chronic fatigue and have to take synthroid.

A few months ago, I bought a bottle of Ice water, I was thirsty and all they had at the motel was this.  It said sugar free and had a bunch of vitamins.  I couldn't read the fine print so I thought it's safe, so I bought several bottles (it had sucralose and maltodextrin in it).  I thought one per day would be ok and it absolutely was delicious.  In the meantime, my wife found some links and bratwurst for breakfast, we didn't know it had wheat in it and we picked up a half gallon of her favorite ice cream and unknown to us they had changed the formula and added wheat.  I had several meals and several bottles before I realized something was wrong.  Did all the sugar add to the issue?  

In a day, I wasn't feeling well, my joints started swelling.  In a couple days, I thought sure I had gout in both hands.  In three days, I needed help to stand up or sit down, the pain was extreme.  I went to the emergency room.  They took blood and gave me cholchistine to alleviate the gout, it did nothing.  I didn't get a report on the test.  The next week the doctor ordered more blood tests and it's all acronyms but a couple items on celiac were listed as high.  The nurse I asked about the report had no clue and the RA was negative.  This has been ongoing for over a month and only now am I able to use my hands, but it's painful.

Under the Celiac labs headline it says: 

endomys-Negat

gliaiga-  5

gliaigg-  1

TRANGLUA -3

tranigg-  8  (high)

immaqnt-  160

Rheumatoid factor <12

Thyroid stimulating hormone: 2.81

Does anyone know what this means?

[trents]

endomys is, aka, "EMA" and is a celiac disease antibody test. It was negative.

gliaiga is, aka, IGP-IGA, is also a celiac disease antibody test. It was negative.

TRANSGLUA is, aka, TTG-IGA, another celiac disease antibody test. It was in normal range.

tranigg is, aka, TTG-IGG, still another celiac disease antibody test. It was high, or above normal range.

immaqnt is, I believe, what is also known as "total IGA" and at 160, looks to be in normal range since it wasn't flagged otherwise. This is a test for IGA deficiency. If someone is IGA deficient then all other IGA test scores cannot be trusted as being accurate. You are not IGA deficient.

Here is a primer explaining the various tests that can be used to diagnose celiac disease:

Celiac disease blood antibody testing is not valid when someone has been gluten free or eating low gluten for a significant period of time. The IGA tests are more specific for celiac disease than are the IGG tests but your slightly high TTG-IGG test score could reflect that you have celiac disease and have had low level exposure to gluten over time or a recent exposure. You could also have NCGS (Non Celiac Gluten Sensitivity).

[Scott Adams]

@fritz2, in the USA it is extremely rare for maltodextrin to contain wheat, although technically, according to the FDA, it can. Various celiac support groups over the last few decades have contacted the 3-4 biggest USA manufacturers of it to discover that corn is almost always used, rather than wheat. The sugar in the vitamin water, however, may have contributed to your gut issues.

 

 

[fritz2]

17 hours ago, trents said:

endomys is, aka, "EMA" and is a celiac disease antibody test. It was negative.

gliaiga is, aka, IGP-IGA, is also a celiac disease antibody test. It was negative.

TRANSGLUA is, aka, TTG-IGA, another celiac disease antibody test. It was in normal range.

tranigg is, aka, TTG-IGG, still another celiac disease antibody test. It was high, or above normal range.

immaqnt is, I believe, what is also known as "total IGA" and at 160, looks to be in normal range since it wasn't flagged otherwise. This is a test for IGA deficiency. If someone is IGA deficient then all other IGA test scores cannot be trusted as being accurate. You are not IGA deficient.

Here is a primer explaining the various tests that can be used to diagnose celiac disease:

Celiac disease blood antibody testing is not valid when someone has been gluten free or eating low gluten for a significant period of time. The IGA tests are more specific for celiac disease than are the IGG tests but your slightly high TTG-IGG test score could reflect that you have celiac disease and have had low level exposure to gluten over time or a recent exposure. You could also have NCGS (Non Celiac Gluten Sensitivity).

Thank you.  Is there a test that does not include consuming wheat that I can request my doctor to have done?  Also, is it a celiac reaction for me to blow up my joints with gout like symptoms?

2 hours ago, Scott Adams said:

@fritz2, in the USA it is extremely rare for maltodextrin to contain wheat, although technically, according to the FDA, it can. Various celiac support groups over the last few decades have contacted the 3-4 biggest USA manufacturers of it to discover that corn is almost always used, rather than wheat. The sugar in the vitamin water, however, may have contributed to your gut issues.

 

 

thank you, is it safe to eat links that contain sucrose and dextrin?  

[trents]

There really is no test for diagnosing celiac disease that does not require the consumption of wheat for weeks or months ahead of the testing. All testing either measures the antibodies produced by the inflammation in the small bowel lining produced by gluten consumption or looks for the damage the to that lining that the inflammation causes. If you take away the gluten, the inflammation subsides and so do the antibodies and healing takes place such that there is no damage to see. The only "test" that does not require gluten consumption is a genetic test but it can only be used as a rule out for celiac disease since 40% of the general population carries the one or both to the genes that have been tied to the development of celiac disease but only about 1% of the general population actually develops celiac disease. 

The joint inflammation you describe could possibly be linked to gluten-related reaction, either celiac or NCGS.

[fritz2]

Well, as much pain as gluten has caused in the past, there's no way in hell I'm taking gluten on purpose.  What is NCGS?  And are there any remedies to quickly get over the swollen joints?

My joints are swollen and hot to the touch and hurt.  For about two weeks they were too painful to even think about using them.  Six weeks later, I still can barely use my hands.  I struggle to get a bottle cap unscrewed they hurt so badly.  Edema in my legs and the knees hurt to walk.  And that was probably a minor exposure as the wheat was listed towards the end of the "contains" list in very fine print we couldn't read without a magnifying glass.

[trents]

As I mentioned above, NCGS stands for Non Celiac Gluten Sensitivity. Celiac disease and NCGS share many of the same GI distress symptoms but NCGS does not damage the lining of the small bowel as does celiac disease and is not an autoimmune condition, as is celiac disease. NCGS is 10x more common than celiac disease but there are no tests for it. Celiac disease must first be ruled out. We actually know much more about celiac disease than we do about NCGS. Some experts believe NCGS can be a precursor to celiac disease. The only known antidote for either is total abstinence from gluten.

Joint pain is a well-established symptom of celiac disease, one of the more than 200 symptoms on a growing list. And many of them present as non-GI related.

[fritz2]

So what relieves the joint pain?

[Scott Adams]

Have you been able to see a doctor or rheumatologist about this? Inflammation like that could point to something like celiac complications, an autoimmune response, or even reactive arthritis, and you deserve relief and answers. In the meantime, gentle heat/cold therapy or anti-inflammatory foods and over the counter meds might help a little, but I hope you can get proper medical support soon. 

[fritz2]

My first post includes the blood test report done by the second doctor.  They told me to take two Naproxen tablets per day.  Absolutely worthless but I'm doing it.  I get to visit the doctor again in two weeks.  These doctors are worthless.  I had to clue them in to the fact that they used to treat me for fibromyalgia 15 years ago with vicodin until some political stooge had it removed from the market.  Then I found out about my grandchild with celiac so I removed gluten from my diet and got better.  (I had hashimoto's then and still do).  They don't read my medical record, or they don't comprehend it.  Either case they're worthless turds with no answers that are helpful.

[Scott Adams]

One thing I've learned over many years here, is that everyone needs to be their own health advocate, and that may include not trusting what some doctors may say or do. In my case I had gluten sensitivity issues all my life, but for ~5 years full blown celiac disease and went to many doctors and was not tested for it until I specifically asked for the tests. So 5 years of torture could have been avoided. On the other side of this was a great allergy doctor that I had who warned me 5 years before all that happened that I should not eat wheat more than once per week--and I ignored him. So there are both bad doctors, and bad patients!

[fritz2]

I just felt more poorly all of the time.  I did notice that on Sundays when we usually had pancakes for breakfast I felt worse but my mom blamed the eggs and milk so we switched to soy and quit using eggs.  (this was over 60 years ago).  The symptoms changed some, but I still didn't feel very good and the constipation diarrhea cycle didn't change much either.  No doctor ever suggested wheat issues and I had never heard of it.  After the head/neck cancer chemo and radiation 30 years ago, the RA like trouble with painful joints and entire area of my body inflamed to the touch, a doctor decided I had fibromyalgia and prescribed vicodin.  That was the only pain-killer that ever worked and allowed me to go to work again.  After my grandchilds diagnosis, I looked into celiac and wondered what-if?  I asked my doctor and he suggested I try eliminating all wheat for a few weeks.  Within 10 weeks my fibro was gone.  I still had the constipation issues.  And then they discovered I had Hashimoto's from the radiation.  Only on this website have I discovered there's an issue with it and celiac.  I'd like to know more about what this issue is.

I'd also like to know more about how to clear this damned swollen joint problem so I can get on with living.