Anyone here have Celiac's Disease?

[Fidelia]

A friend of mine whose family all have celiac's seems very certain that this would explain a number of unexplained symptoms that I have been dealing with for the last couple of years.

From the checklist on the book I looked at, I'm inclined to agree, and I also have about five close family members suffering from same, as well as a number of auto-immune diseases in our extended family (thyroid, MS, fibromyalgia etc)

How did you present? How has it affected your life?

 

[Redbone]

fidelia,

I don't have it but all of my children and my ex do. Celiac disease can mimic quite a few diseases in the initial presentation. In my ex, it showed up first as dermatitis herpetiformis. The dx was missed because he mainly had the rash on his hands and arms. It took about 5 years for it to actually show up in his gut. I thought it was a bad case of giardia but he got worse over time. Malabsorption, abdominal pain, fever, extreme fatigue, bloating. The doctor still missed his dx--I figured out what he had and insisted on testing. Later, he also turned up to have IgA nephropathy (again, deposits of IgA immune complex in places where it shouldn't be causing damage). He hasn't been dx'd with it but I am certain that he also has Crohn's disease.

Yes, there is a huge overlap with autoimmune disease. They get lonely and don't like to travel alone in one person or in one family. Which means that you often find people with celiac disease with thyroid disease, RA, or psoriasis. Some of the HLA markers predispose people to these conditions and apparently, with some monkeying around with epigenetics, the disease will manifest.

My oldest has DH but no GI symptoms. Another one had abdominal pain and just stopped growing (he still hasn't caught up).

Following a gluten-free diet is very, very hard. An 1/8 tsp of gluten is enough to trigger an immune response. You have to be utterly paranoid about everything you put in your mouth. Like calling manufacturers to ask if they use wheat flour to dust the inside of gum or candy wrappers. You will have an easier time in Canada because the labeling is better there. If I'm not mistaken, you may even be able to get assistance because a GF diet is medically necessary with a dx of celiac disease.

Let me know if you have any more questions. I'll be happy to help.

 

[PeaceBaby]

In Canada, with a dx of celiac, you can claim the expenses of GF free food on your tax return. But really, all I do now is eat things the way they come in nature, plain. With a few notable exceptions, like chocolate.

I won't go into all the tedious details (thyroid, digestive, gallbladder, rashes and odd inflammatory probs) here, but finally putting a name to symptoms that I had experienced for over a decade was beneficial to me. You get tired of going to the Dr and him telling you that you need to "de-stress" as the fix ... I have been gluten-free now for ... 8 years? To me, I am just happy there's a way for me to feel relatively well most of the time, unless I accidentally glutenize myself.

I was on a GF diet for two years before I had a colonoscopy & biopsy taken; those tissue samples did not diagnose me as celiac. Therefore, because only blood tests have shown me positive with antibodies, my official dx is "gluten intolerant".

If you think you have it, go to a gastroenterologist, and get a colonoscopy BEFORE you go on a GF diet, if getting a dx is important to you. Otherwise you could just go GF and see how it makes you feel overall. It is NOT easy, for the reasons [MENTION=9883]Redbone[/MENTION] has pointed out above. You just can't believe how many prepared foods have gluten in them. That said, there are more and more products pointed to a GF diet all the time now, and they are getting way easier to find.

But, I just eat simple. Plain and simple.

Any more questions, fire away, I am happy to help if I can.

 

[Fidelia]

Well, I've been reading about it and it would explain a lot of seemingly unrelated problems. I test negative for thyroid, but have this strange list of symptoms:

edema - getting worse every year over the last 3 or 4 years
fierce itching on my palms, soles of feet and between my fingers that only lasts about 5 minutes at a time but I am ready to scratch my skin bloody
acid reflux affecting voice/swallowing
bad circulation/broken blood vessels and capilleries/Reynaud's/easy bruising on legs
numbness/tingling in feet
extremely cold extremities and nose
intermittent diarrhea/constipation - never a problem in the past
reaction to fried/fatty foods - must find a bathroom IMMEDIATELY about 10 minutes after eating (both dad and sister have had gallbladder removed, as well as many aunts and uncles)
anemia/paleness
chronic exhaustion for years
eczema like symptoms and unexplained skin rashes/problems
thin tooth enamel

I've seen a number of different doctors. One said that maybe I was just healthier than I think I am. I get about 7-9 hours of sleep a night but still am really tired and a couple of times a year need to just sleep for two or three days/nights in a row to recharge.

Family history - don't know if it makes a difference but...

grandparent with chronic stomach complaints and depression/bipolar disorder, two aunts, 3 first cousins with celiacs, lots of thyroid issues in extended family, cousin with MS, cousin with fibromyalgia
three grandparents with colon cancer

What kind of testing do they do for this? Is it a drawn out and involved process?

 

[Kasper]

It's a blood test, you can get false negatives but it is the non-invasive place to start. Be sure to NOT start a GF diet before this, the only sure-fire way to test is with a scope and again the person should not be eating a GF diet or the body will start to repair itself and therefore harder to detect.

My personal antidote is get a glucose test at the same time.

I thought I was celiac, a doctor suggested the possibility to me, I knew my issue was caused by what I was eating, and upon reading all the symptoms it fit into place perfectly, seriously it was spot on. 3 blood tests later and 6+ months of eating GF I had no idea what was wrong again as despite an initial improvement from removing gluten from my diet it had petered out.

Another doctor sent me for a glucose and wham, majorly insulin resistant. I had looked at symptoms relating to that problem before and they did not fit so well, so I take relating to symptoms with a grain of salt now, they point you in the direction but a diagnosis is needed. Reason I say that is not because it's nice for us to know what we're dealing with, but because failure to get the correct diagnosis could have dire effects, a celiac eating gluten will damage their intestines, someone with insulin resistant not working to reverse it will end up diabetic, with mismanagement these problems can get worse.

 

[PeaceBaby]

What kind of testing do they do for this? Is it a drawn out and involved process?

Your dr might start with blood tests to see if you have high levels of certain antibodies showing you may have a sensitivity to gluten. If positive, they will likely want to do a biopsy, as below. Blood tests are not as reliable as the biopsy for dx.

The "gold standard" for a celiac dx is the intestinal biopsy showing damage to the villi in your small intestine. That involves getting a gastroscopy done, where a tube is inserted from your mouth to small intestine. You can have this test done with or without the sedation, but I would recommend getting the sedation, you will remember little to nothing about the procedure and it's fast, a gastroscopy is about 15 - 20 minutes in length.

You can get genetic testing done, which can show you have the genetic tendency to develop celiac.

Your symptoms do sound like you might have celiac.

Some people just go GF and see if they feel better, as I did after basically guessing myself. I had allergy tests done that showed I was allergic to wheat, rye and barley and that's when the light went off for me and I went GF at that point in time. Problematically, it makes getting a dx much harder as the levels of antibody reduce in your bloodstream and damage to your villi begins to heal. SO, if you are going to try to get a dx first, DO NOT stop eating your regular diet.

to you - I used to have to know where every bathroom where I was shopping or in the grocery stores, so I know it's challenging and not fun to go through all this. Plus, it's likely my thyroid problems and other issues were related for years, including poor enamel on my teeth.

A good link with concise and up to date info: http://www.celiacdisease.net/overview

 

[Fidelia]

It's a blood test, you can get false negatives but it is the non-invasive place to start. Be sure to NOT start a GF diet before this, the only sure-fire way to test is with a scope and again the person should not be eating a GF diet or the body will start to repair itself and therefore harder to detect.

My personal antidote is get a glucose test at the same time.

I thought I was celiac, a doctor suggested the possibility to me, I knew my issue was caused by what I was eating, and upon reading all the symptoms it fit into place perfectly, seriously it was spot on. 3 blood tests later and 6+ months of eating GF I had no idea what was wrong again as despite an initial improvement from removing gluten from my diet it had petered out.

Another doctor sent me for a glucose and wham, majorly insulin resistant. I had looked at symptoms relating to that problem before and they did not fit so well, so I take relating to symptoms with a grain of salt now, they point you in the direction but a diagnosis is needed. Reason I say that is not because it's nice for us to know what we're dealing with, but because failure to get the correct diagnosis could have dire effects, a celiac eating gluten will damage their intestines, someone with insulin resistant not working to reverse it will end up diabetic, with mismanagement these problems can get worse.

Wow! What does insulin resistance do to you? What did you end up having to change instead?

 

[Fidelia]

fidelia,

I don't have it but all of my children and my ex do. Celiac disease can mimic quite a few diseases in the initial presentation. In my ex, it showed up first as dermatitis herpetiformis. The dx was missed because he mainly had the rash on his hands and arms. It took about 5 years for it to actually show up in his gut. I thought it was a bad case of giardia but he got worse over time. Malabsorption, abdominal pain, fever, extreme fatigue, bloating. The doctor still missed his dx--I figured out what he had and insisted on testing. Later, he also turned up to have IgA nephropathy (again, deposits of IgA immune complex in places where it shouldn't be causing damage). He hasn't been dx'd with it but I am certain that he also has Crohn's disease.

Yes, there is a huge overlap with autoimmune disease. They get lonely and don't like to travel alone in one person or in one family. Which means that you often find people with celiac disease with thyroid disease, RA, or psoriasis. Some of the HLA markers predispose people to these conditions and apparently, with some monkeying around with epigenetics, the disease will manifest.

My oldest has DH but no GI symptoms. Another one had abdominal pain and just stopped growing (he still hasn't caught up).

Following a gluten-free diet is very, very hard. An 1/8 tsp of gluten is enough to trigger an immune response. You have to be utterly paranoid about everything you put in your mouth. Like calling manufacturers to ask if they use wheat flour to dust the inside of gum or candy wrappers. You will have an easier time in Canada because the labeling is better there. If I'm not mistaken, you may even be able to get assistance because a GF diet is medically necessary with a dx of celiac disease.

Let me know if you have any more questions. I'll be happy to help.

Thank you, ma'am. I'll take you up on that.

 

[Fidelia]

Your dr might start with blood tests to see if you have high levels of certain antibodies showing you may have a sensitivity to gluten. If positive, they will likely want to do a biopsy, as below. Blood tests are not as reliable as the biopsy for dx.

The "gold standard" for a celiac dx is the intestinal biopsy showing damage to the villi in your small intestine. That involves getting a gastroscopy done, where a tube is inserted from your mouth to small intestine. You can have this test done with or without the sedation, but I would recommend getting the sedation, you will remember little to nothing about the procedure and it's fast, a gastroscopy is about 15 - 20 minutes in length.

You can get genetic testing done, which can show you have the genetic tendency to develop celiac.

Your symptoms do sound like you might have celiac.

Some people just go GF and see if they feel better, as I did after basically guessing myself. I had allergy tests done that showed I was allergic to wheat, rye and barley and that's when the light went off for me and I went GF at that point in time. Problematically, it makes getting a dx much harder as the levels of antibody reduce in your bloodstream and damage to your villi begins to heal. SO, if you are going to try to get a dx first, DO NOT stop eating your regular diet.

to you - I used to have to know where every bathroom where I was shopping or in the grocery stores, so I know it's challenging and not fun to go through all this. Plus, it's likely my thyroid problems and other issues were related for years, including poor enamel on my teeth.

A good link with concise and up to date info: http://www.celiacdisease.net/overview

PB - you always seem to have great info at your fingertips. It's nice to have a maven around that can do that. Thanks a million!

 

[Kasper]

Wow! What does insulin resistance do to you? What did you end up having to change instead?

Celiac's is something you have or your don't and if you do will stay with you for life, the only healthy answer is to avoid all gluten products.

Insulin resistance is reversible although people can have it without knowing and those who do know can resist making the necessary changes and end up with type II diabetes, it's often referred to as "pre-diabetes" so people understand the consequence, there are a number of reasons someone may get it including lifestyle and genetics. When I eat carbs or sugars the insulin my body produces goes up more than it does for those without this condition, 1 hour later they are higher again, 2 hours later they are even higher. I feel extremely lethargic, there was a time where all I could do on weekends was sleep/doze, and I feel ill. The time difference between eating and feeling the effects made it very hard for me to figure out what was wrong.

Celiac's avoid gluten, those with insulin resistance limit sugar and carbs, especially high GI ones.

Eating a celiac diet helped as there are a lot more whole foods and avoidance of pre-packaged foods but many wheat based products are substituted for things like potato and corn, which are higher-than-is-good-for-me GI.

 

[Fidelia]

Ah okay - I've heard of pre-diabetes before. I didn't know the official name for it. Have you been able to reverse it? I would imagine that in a sense that diagnosis was quite a relief as opposed to the other one.

 

[Fidelia]

If I decide to get tested (and the soonest dr appt is Oct 4) would I mess up the test if I decided now to try gluten free for a week and see how I feel? Would that be enough time to even notice any difference?

 

[Kasper]

2 weeks is best, imo.

And missed your question: Not yet, but it's only a recent discovery. It's nice to have an answer to something which has been bothering me for years and years and caused me to be scared of food.

 

[Redbone]

If I decide to get tested (and the soonest dr appt is Oct 4) would I mess up the test if I decided now to try gluten free for a week and see how I feel? Would that be enough time to even notice any difference?

What are you going to get tested for? Just the antibodies?

Immune complexes tend to stick around in the body for a little while but I'd continue to eat gluten. Be aware that depending on what tests are used and how they are read (some are read by a tech) may lead to a false negative. If you do have a positive test, you definitely need to continue to eat gluten in order for your biopsy results to show celiac disease.

Mm, yes...pre-diabetes is supposed to be reversible.

 

[PeaceBaby]

If I decide to get tested (and the soonest dr appt is Oct 4) would I mess up the test if I decided now to try gluten free for a week and see how I feel? Would that be enough time to even notice any difference?

I would just keep eating your normal, typical diet.

Be aware that depending on what tests are used and how they are read (some are read by a tech) may lead to a false negative. If you do have a positive test, you definitely need to continue to eat gluten in order for your biopsy results to show celiac disease.

Yes, and as Redbone says, the blood tests are notorious for false negatives ... and here's a link for you on the tests:

http://americanceliac.org/celiac-disease/diagnosis/

 

[Fidelia]

Thank you ladies! I appreciate the info.