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Diagnosised Ate Age 68

Karli

By Karli
in Coping with Celiac Disease

Recommended Posts

Karli Rookie
Karli
Posted

I went to the doctor because of a bad taste in my mouth. Thought it might be acid reflux. He sent me to a gastroent/specialist..... ( not on my spell list) I had an upper and lower GI and a small bowel biopsy as well as photos.... The specialist was certain that I had celiac disease but scheduled blood work for me anyway... The blood work confirmed that I do indeed have celiac disease.

I have been perplexed as to why and when and what triggered this autoimmune reaction in my body... Since I am a woman over 6 foot tall. I am pretty sure I was not effected by this as a child.

I had mono at age 17 and have joked that "I never recovered from mono"... now I am beginning to think that I was not joking.!!!!! (Mono causes extreme fatigue and mild depression.)

I have good days and bad days... my thoughts go back to a book or article I read about prisoners of war after WWII. The prisoners in the Phillipines were very malnourished when they were given a balanced diet after the war... their symptoms got worse before they got better...

New symptoms include... a loud digestive tract... I gurgle and gargle and make unusual noises at weird times... suddem nausea that passes very quickly....

After several weeks 'gluten free' I still have bad taste and dry throat which were my original symptoms.. the dry throat is much less now than before.... the bad taste seems just as often.

I read some posts by people in their 20 and 30s discovering they had celiac and wondering what took so long.... It seems there are many silent cases of celiac out there...

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kenlove Rising Star
kenlove
Posted

I was diagnosed at 55. Read that 20% gets it around age 60, we were just early and late. I'm sure you'll get other detailed answers but your not alone. I never had any problems before celiac.

Ken

I went to the doctor because of a bad taste in my mouth. Thought it might be acid reflux. He sent me to a gastroent/specialist..... ( not on my spell list) I had an upper and lower GI and a small bowel biopsy as well as photos.... The specialist was certain that I had celiac disease but scheduled blood work for me anyway... The blood work confirmed that I do indeed have celiac disease.

I have been perplexed as to why and when and what triggered this autoimmune reaction in my body... Since I am a woman over 6 foot tall. I am pretty sure I was not effected by this as a child.

I had mono at age 17 and have joked that "I never recovered from mono"... now I am beginning to think that I was not joking.!!!!! (Mono causes extreme fatigue and mild depression.)

I have good days and bad days... my thoughts go back to a book or article I read about prisoners of war after WWII. The prisoners in the Phillipines were very malnourished when they were given a balanced diet after the war... their symptoms got worse before they got better...

New symptoms include... a loud digestive tract... I gurgle and gargle and make unusual noises at weird times... suddem nausea that passes very quickly....

After several weeks 'gluten free' I still have bad taste and dry throat which were my original symptoms.. the dry throat is much less now than before.... the bad taste seems just as often.

I read some posts by people in their 20 and 30s discovering they had celiac and wondering what took so long.... It seems there are many silent cases of celiac out there...

ShayFL Enthusiast
ShayFL
Posted

From what I have read in these groups, you are lucky they caught it at all.

The bad taste could be something unrelated to Celiac. You could have an overly acidic body. The way to remedy this is to eat lots off fresh fruits and veggies (mostly raw) and cut down on too many meats, coffee and definately sugars. You can also supplement with Ph drops in your water (which you need to drink lots of).

irish daveyboy Community Regular
irish daveyboy
Posted

Hi,

I was diagnosed at 57 yrs of age and I believe my trigger was

my cessation of smoking after 45 yrs.

.

Open Original Shared Link

.

6 months after stopping smoking, I went through 3 months of constant vomiting and diarrhoea where I lost 56 pounds.

.

I thought I was going to die, I honestly believed I had 'Cancer', thank God that was not the case.

.

David

munkee41182 Explorer
munkee41182
Posted

My cousin was diagnosed at 6, my aunt at 40-something, me at 20 and my grandmother in her mid 70s. My cousin was the first diagnosed and they never thought to test her because they thought that this was something that in "older women of Irish decent." When my cousin was diagnosed (this was almost 15 years ago), that was one of the thoughts because celiac didn't seem as common as it does now. Unforunately it rears it's head at the oddest times. Mine was 3 months before I turned 21 and all I kept saying prior to that was "i want a big a$$ burger and a big a$$ beer for my birthday" and guess who couldn't eat or drink my burger and beer....that's right the girl who just got diagnosed with celiac.

But as PP had said, you should be lucky that it was caught at all....and the bast taste might be related to medication?

Keep your chin up! This just means that you get to stick around for a while longer :-)

jerseyangel Proficient
jerseyangel
Posted

I wasn't diagnosed until I was 49--I did have symptoms for about 20 years (mostly anemia and nausea), but doctors never mentioned Celiac and I had never heard of it back then.

I believe my trigger was a C-section I had at 29, although I had stomach problems, anxiety and fainting as a child that went away during my teens and early 20's.

A bout with the flu in 2003 was what put me over the edge, as I felt I never really recovered --I began to have horrible GI issues, persistant anemia (hemiglobin of 8), brusing, depression, anxiety, brain fog, tingling, numbness, and nausea. I had to quit my job at that point and luckily read an article about Celiac Disease--prompting a visit to a gastroenterologist.

I often wonder what the "true" trigger was for me, actually. For you, it sounds like the mono could have been it since you don't remember anything from your childhood that may have played a role.

It gets confusing sometimes, that's for sure--glad you found us and let us know how we can help you navigate your gluten-free lifestyle :) Welcome!

missy'smom Collaborator
missy'smom
Posted

If you feel like you never really recovered from mono, that very well may be your trigger. I can say the same about my first and only pregnancy/childbirth and my sister can say the same about the second of two surgeries that were close together. Those were our triggers and they are common ones. We can both say that we haven't been well a day since. We were both in our late 20's.

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ShayFL Enthusiast
ShayFL
Posted

I was a sickly child and thin. But plumped up in HS. Had a lot of fatigue. But that went away over time. My trigger was the birth of my daughter 12 years ago. Never the same since. :( And it is exactly the reason I only have ONE child. I wanted two. :(

mushroom Proficient
mushroom
Posted

I was self-diagnosed at 67. Had always had some symptoms but they became much worse after a head-on auto accident at 49. People kept asking me if I had recovered from my accident and I said yes, but I wanted to say no because I didnt really feel that I ever did, and then I suffered a mycoplasma infection which made me really ill. By that time I had quit talking to my docs about my digestive problems because of the way they reacted and because I had other things to deal with. So it just took me a long while to come to grips with it.

My niece was diagnosed as celiac in her 20's after a bout of mono. It seems like there is usually a trigger which throws us over the edge.

Karli Rookie
Karli
Posted
  • Author
Hi,

I was diagnosed at 57 yrs of age and I believe my trigger was

my cessation of smoking after 45 yrs.

.

Open Original Shared Link

.

6 months after stopping smoking, I went through 3 months of constant vomiting and diarrhoea where I lost 56 pounds.

.

I thought I was going to die, I honestly believed I had 'Cancer', thank God that was not the case.

.

David

interesting!? I was a smoker too but did not have similar problems when I finally was able to quite after umpteen tries... I did have drastic stomach problems the summer that I tried to quit using nicotine gum.... Then it was about 6 months before my system settled down...

jerseyangel Proficient
jerseyangel
Posted

The years that I smoked (age 16-25) were the most symptom-free of my whole life. :)

Karli Rookie
Karli
Posted
  • Author
I was self-diagnosed at 67. Had always had some symptoms but they became much worse after a head-on auto accident at 49. People kept asking me if I had recovered from my accident and I said yes, but I wanted to say no because I didnt really feel that I ever did, and then I suffered a mycoplasma infection which made me really ill. By that time I had quit talking to my docs about my digestive problems because of the way they reacted and because I had other things to deal with. So it just took me a long while to come to grips with it.

My niece was diagnosed as celiac in her 20's after a bout of mono. It seems like there is usually a trigger which throws us over the edge.

When the doctors asked me about foods that bothered me ... possible allergies... my list was 3 pages long.... 3 pages of foods and ( products ) that I avoided... when I look at the list now.... I can see that some of my "allegeries " were reaction to gluten... the oily after taste and digestive turmoil after eating baked goods was probably not reaction to oil but to gluten... like wise I can now trace my avoidance of fake dairy products to gluten... so in a sense... I had self-diagnosed too... but I did not have a name for it... I just kept adding " things" to the list.... in a way that makes it easier for me now... because I have spent the last 30 years being a "food dective"/

mushroom Proficient
mushroom
Posted
The years that I smoked (age 16-25) were the most symptom-free of my whole life. :)

Me too (age 17-29)--well except for the chronic bronchitis and shortness of breath :unsure:

PeggyV Apprentice
PeggyV
Posted

Has anyone else had symptoms, only have them to disapear after several years? Then come back a few years later (often after triggers, birth of daugher, divorce, etc.) Also very small and thin until 16 then I finally grew.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Could the bad taste in your mouth come from mercury amalgams (the silver-colored fillings)? They can leak mercury, which is a horrible toxin, and can cause all kinds of bad things in your body, including (drum roll) gluten intolerance.

Another possibility is that the bad taste is acid reflux--which might improve on a gluten-free diet, but also might be a sign of a common bacterial infection called helicobacter pylori.

flourgirl Apprentice
flourgirl
Posted

As I look back I see many, many times that Celiac raised it's ugly head. Problem was, no one knew anything about the disease back then...at least in my corner of the world. I had chronic infections from infancy....kidney, bladder, ear, sinus. Until I was in my late 30's I could expect to have ear infections. I was tested for allergies as a child and reacted to every single thing. My otolaryngologist told me that my body was reacting to allergens by attacking itself!!! So close.....but still so far. Many times I had anemia (most of my life), and it was just considered to be normal for me...except when it got so bad I was one giant bruise head to toe. I had migraines and ulcers in high school....doctors advise was to learn to deal with stress and basically get over it! When I was pregnant with my son I was sick for 8 months. I actually lost weight for the first 5 months. I thought it was because I was working so many hours, and because of the severe nausea.

Through my 30's and 40's I was having a terrible time with inflammation of my joints and tendons (which since going gluten-free I have not had one incidence of tendonitis), on top of everything else. What finally caused the search for answers was a case of the flu that not only didn't go away but got worse. My doctor (a new one for me) thought I had cancer. Just when I reached a point that I could not function at all, I had a colonoscopy; and because I had such severe pain in my upper abdoman it was decided to do a endoscopy at the same time. Thank God, because I FIANLLY got a diagnosis....almost by accident, if you will.

I'll soon be 50, and for the first time in my memory, I'm feeling fairly healthy. I look forward to good health and peace in this stage of my life. If only I could get my family members to all be tested and get their own health issues under control.

Puddy Explorer
Puddy
Posted
Has anyone else had symptoms, only have them to disapear after several years? Then come back a few years later (often after triggers, birth of daugher, divorce, etc.) Also very small and thin until 16 then I finally grew.

I was always told I had a 'nervous stomach' as a child. Remember alot of mouth sores, 10-12 cavities everytime I went to the dentist, always covered in black & blue marks. I had 2 really bad years at 16 and 22 with diarrhea and huge weight loss. At 22 I discovered I was lactose intolerant and that's what I attributed the diarrhea to at that point. I stayed away from milk and used Lactaid and seemed to be fine. Fast forward 30 years later and at 51 I went for my bone density test and physical and doctors discovered I had osteoporosis and severe anemia. After further testing my GI doctor diagnosed me with celiac disease - positive blood test, positive biopsy, positive gene test. So yes, my gastrointestinal symptoms disappeared for 30 years, but the disease was still doing it's 'work' on me.

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    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
    • julie falco
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      By julie falco · Posted

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    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         
    • knitty kitty
      Getting rid of the belly bloat

      By knitty kitty · Posted

      Welcome to the forum, @Karen Chakerian, We need more information, please.   What homeopathic remedies or medications are you taking now?  Do you still have the blood pressure and other symptoms?  What is included in your diet currently?  Dairy? Oats?  Processed gluten free foods?  Vegetarian?  Other food allergies?  Do you take vitamins?  When gluten is removed from the diet, the body stops making the anti-gluten antibodies that are usually measured in blood tests used to diagnose Celiac disease.  To measure the anti-gluten antibodies, you would have to consume 10 grams of gluten (4-6 slices of bread or equivalent) per day for a minimum of 2 weeks or longer.   A DNA test which looks for the most common genes for Celiac Disease may be a less invasive avenue to pursue.  Has your doctor checked you for nutritional deficiencies? Glad you're here!
    • knitty kitty
      Dangerously underweight, Perfect gluten free and insomnia

      By knitty kitty · Posted

      @SaiP, Insomnia is listed as one of the side effects of Loratadine.   Niacin B3 in the form Tryptophan, Pyridoxine B 6, Folate B 9, Cobalamine B12, Magnesium, and Thiamine B 1 are needed to produce the sleep hormone melatonin.  Insomnia can also be caused by low Vitamin D and low Vitamin A.   A strict gluten free diet can be low in essential  vitamins.   Gluten containing products are required to replace vitamins lost in processing and milling.  Gluten free processed foods are not required to have vitamins added.  White rice is not a good source of B vitamins.  Brown rice is little better.  Exposure to light (even grocery store lights) and heat (during transportation) can destroy B vitamins.   B vitamins are easily lost in urine and diarrhea because they are water soluble.  If you have had diarrhea longer than two weeks, you are probably low in B vitamins.  Fat based vitamins, like Vitamins D and A, can be low due to fat malabsorption in Celiac disease, too.   Damaged villa in Celiac Disease do not absorb B vitamins and fat based vitamins and minerals well.  Supplementing with essential nutrients while villi heal boosts the ability to absorb essential vitamins and minerals.  Vitamins are stored and utilized inside cells.  Blood levels are not accurate measurements of vitamin deficiencies.  You can have normal blood levels while having deficiencies inside cells.  The brain orders cells to release their stores so the brain and heart can keep functioning.  This results in normal blood levels, but vitamin deficits inside cells.   Your indulgence in a little bit of bread is providing some, but insufficient amounts, of vitamins needed to make sleep hormone melatonin while keeping your inflammation and histamine production high.   In addition to a B Complex, I took 1000 mg of tryptophan before bed to correct my insomnia caused by high histamine levels.  Correcting my Vitamin D level to between 75-100 nmol/ml helped as well.  Also Passion flower extract is helpful in falling asleep quickly.   Please stop eating gluten bread as this will keep your autoimmune response triggering and your antibody levels won't go down and your histamine levels will stay up as well.   Celiac is a marathon, not a sprint.  P.S. I wanted to reiterate that insomnia and weight loss are symptoms of Thiamine deficiency.  Benfotiamine is a form of thiamine that promotes intestinal healing.  Thiamine is water soluble and nontoxic even in high doses.  High doses are needed to correct thiamine deficiency. All mitochondria in cells utilize thiamine.  The World Health Organization says to take 500 - 1000 mg per day of thiamine and look for health improvement.  Diets that are high in carbohydrates like rice and gluten require more thiamine.  For every 1000 calories from carbohydrates, we need 500 mg more thiamine.  Thiamine is found in meat.  Few veggies contain thiamine. Can you rise from a squat without assistance?  This is the field test for thiamine deficiency used by WHO.  If you cannot rise easily from a squat you may be thiamine deficient.
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