Celiac Not Starting Until Mid 40's?

[hayley3]

I am not dx'd.

I had an endoscopy and a colonoscopy last year and there was no signs of anything. Completely normal. They even gave me a picture.

I just read that when they do the endoscopy they look for signs of celiac and if they find anything, that is when they do the biopsies.

My GERD and bloating symptoms started after my hysterectomy at age 42, although my gallbladder was removed in my early 20's. So the way I figure it, is if I have had stomach trouble since my 20's, there would be some sign of trouble in my duodenum, even without the biopsy. Like what this web page says: Open Original Shared Link

I guess my question is, if my duodenum looks good at age 51, is there any way that I could still have celiac?

[dbmamaz]

Even if you dont have celiac, you could still have gluten sensitivity. You could still take a 2 week break from gluten and see if you feel any better - thats what you really want, right, to feel better, not just get a doctor give you a name for your suffering!

[hayley3]

It's not the doctor's approval I'm after, but trying to figure out if my other problems, such as thyroid, dry eye, osteoporosis, etc, are just coincidences or if something is being missed.

Without a dx, it really is too easy to cheat also. IMO

I did go gluten free starting in November and I fell off the diet about 5 days ago. I really didn't notice anything at first. Now I am bloating but it could be something else. I'm gonna retry.

Thanks!

[nora-n]

I noticed the fatigue lifted after 7 months gluten-free.

I had had a gluten challenge before , to get the boipsy, I was back on gluten 5 weeks (negative results, too short but one week after the neurological symptoms came back (the floor seemed so far away) and I had a burning sensation again (which had disappeared while gluten-free) and then I had to increase the dose of thyroxine as I went hypo, I was up to onenadahalf 125

[Ursa Major]

It's not the doctor's approval I'm after, but trying to figure out if my other problems, such as thyroid, dry eye, osteoporosis, etc, are just coincidences or if something is being missed.

I did go gluten free starting in November and I fell off the diet about 5 days ago. I really didn't notice anything at first. Now I am bloating but it could be something else. I'm gonna retry.

First of all, if they didn't actually do a biopsy but rather just took pictures, celiac disease has NOT been ruled out. Because most of the time you absolutely can't tell if there is damage with the naked eye, but need a microscope to see it. Any doctor who claims you can't have celiac disease by just looking is an idiot.

Secondly, osteoporosis is one of the main symptoms of celiac disease! It is secondary to malabsorption of vitamin D and calcium and magnesium (all of which are related to damage in the upper intestine).

A LOT of people with celiac disease also have thyroid problems, another clue. I also used to have dry eye before going gluten-free. That problem went away with the gluten-free diet.

Bloating is another common symptom of celiac disease.

Many people with celiac disease have had their gallbladders removed (including myself) at a fairly young age, that is another clue. Also, GERD is a common symptom of celiac disease.

You have a ton of symptoms that point to celiac disease (or at least gluten intolerance, really, the same thing as far as I am concerned). I bet you are low in a bunch of nutrients due to malabsorption, all your symptoms point to that conclusion.

I suggest getting tested with Open Original Shared Link. They don't require you to be on gluten, and their tests are accurate up to a year after going gluten-free. That way you will also have confirmation other than your own observations.

[Gemini]

It's not the doctor's approval I'm after, but trying to figure out if my other problems, such as thyroid, dry eye, osteoporosis, etc, are just coincidences or if something is being missed.

Without a dx, it really is too easy to cheat also. IMO

I did go gluten free starting in November and I fell off the diet about 5 days ago. I really didn't notice anything at first. Now I am bloating but it could be something else. I'm gonna retry.

Thanks!

hayley....There is no doctor on the planet that can suspect Celiac just by looking at your duodenum....villi blunting can only be seen using a microscopic exam after the biopsy is taken. I know of people who were told this and the doctor said he really didn't think they had it because everything looked fine and, lo and behold, positive biopsy. If you are sensitive as opposed to full blown Celiac, then you'll still get a negative result and will be told to continue eating gluten....which can make for a miserable life.

I would also like to add that I have all of the same problems as you do. Hashimoto's thyroid, Sjogren's Syndrome and osteopenia so, if I were your doctor, I would HIGHLY suspect Celiac.

You can be tested via blood work to see if your dry eye problem is true Sjogren's and, if it is, you may want to reconsider going gluten-free for life. Trust what your body is telling you with all these hints, if you cannot get satisfaction from the doctors...they are really bad at diagnosing celiac disease/GS.

Once you go gluten-free, there is no need to cheat. There are just so many awesome substitutes for anything you might crave that contains wheat, barley or rye. Your health is worth it!

[hayley3]

Thank you Nora!

Ursa Major,

Thanks! I really thought I had celiac, but then I remembered the endoscopy and my calcium levels were normal too.

I didn't know that about the endoscopy.

My actual list of symptoms (I just found it) also includes colon polyps and sacroilitiis, which is what made me pretty sure I had celiac in the first place. I just had a doctor tell me you cannot have celiac with constipation, so that made me doubt. Sacroiliitis can also be caused by ulcerative colitis but I don't have that ulcerative colitis either.

I would do anything to get rid of my dry eyes. I am currently seeing double letters in one eye, severe pain behind my eyes and also light sensitivity and starbursts around lights, and they are saying it is all attributed to the dry eye.

[loco-ladi]

Always remember Doctors are only as smart as the tip of a pin, if they are not led to the correct dtrinking hole they would perish from thirst.

Information is not only knowledge but in some cases is the enjoyment of life in general. Dont take everything you are told by a doctor for granted, prove it to yourself in whatever way you can if you cant... then start asking questions.

[Ursa Major]

That your doctor claims you can't have celiac disease with constipation REALLY proves to me that he knows nothing about celiac disease. Because it can go either way. Both diarrhea and constipation are common symptoms of celiac disease (I used to alternate between them all my life). The same goes for weight. Half of people with celiac disease lose weight, the other half gains weight (your body goes into starvation mode and converts anything it can hang onto into fat).

Have you seen an optometrist because of your eyes? Until your eyes get better, you can also go to your grocery store or pharmacy and buy a product called 'Real tears' (I think that is what it's called), which are eye drops to relieve dry eyes. You may want to use those for relief for now. That is what I did until that problem resolved on its own on the gluten-free diet.

[hayley3]

Loco Ladi, I know that doctors nowadays are not real smart but you would figure they would know the basics.

Ursa Major, I think I'm gonna try the $99 test and see what I get.

The doctor tested my daughter with an IGA and IGG test and they both came back negative. She has similar symptoms to mine. Her doctor also said the thing about the constipation not being a symptom of celiac.

Yes, I have been seeing eye drs for a long time. Now those eye drs are really a lost group. I don't think they could identify a lady bug if they saw one land on a bug encyclopedia!!!!!

However, I got one this time, that actually knew his stuff. He has actually ordered Restasis for me. It took me a year after I had asked for it to get to this point.

However, if I can get rid of it on my own, without medicine, I would rather do it that way by just not eating gluten.

Thanks for your help!

[Gemini]

Yes, I have been seeing eye drs for a long time. Now those eye drs are really a lost group. I don't think they could identify a lady bug if they saw one land on a bug encyclopedia!!!!!

However, I got one this time, that actually knew his stuff. He has actually ordered Restasis for me. It took me a year after I had asked for it to get to this point.

However, if I can get rid of it on my own, without medicine, I would rather do it that way by just not eating gluten.

Thanks for your help!

[AliB]

I can't say this often enough - I want to shout it from the rooftops!

Gluten Intolerance is the precursor to virtually all illnesses and disease. It is quietly beavering away doing its dirty work for years before the symptoms become apparent. Celiac Disease is just one of the high end results of the damage caused by Gluten Intolerance.

Yes, some may appear to have what is interpreted as a genetic predisposition for it but it can also be diagnosed through biopsy even when there are NO genetic markers, simply because the damage inflicted by the Gluten Intolerance has become SO bad that the gut has stopped functioning.

All symptoms, whatever they might be, are the body's' way of telling you it isn't getting enough nutrients. It is not getting enough nutrients because the gluten is stopping it functioning properly. Just because the biopsy has failed to pick up any damage, does not mean that there isn't any! Even microscopic changes to the villi and the gut motility can affect the way the body absorbs nutrients. Whilst it may be able to absorb certain nutrients, it cannot absorb others. Perhaps it absorbs water soluble ones but not fat-soluble. Who knows? No-one. They are not looking for it and even if they were, they do not know enough about how it works to be able to tell!

Take thyroid problems. Hypothyroidism is an under-active thyroid. Give it thyroxin and it recovers. It was not well because it was not getting enough of the right nutrients. If the malabsorption was addressed, it would then be better able to absorb the correct nutrients and the deficiency would be addressed without the need for medication, just with nutritional aids and good food. People have to stay on Thyroxin because the root cause is never dealt with and the malabsorption continues to decline until other problems then become apparent. Undoubtedly Hyperthyroidism is also due to malabsorption. If another gland or organ is suffering due to a different deficiency, the thyroid will attempt to make up the shortfall and end up in a state of stress in overproduction. It all comes back to Gluten.

Gluten and sugar are two of the most evil foods we can eat. They are tasty, and tempting, a feast for both the eyes and the palate - a fact which makes them all the more evil. We ingest a huge amount of both. Because modern Gluten has been modified by Man's meddling over the centuries from a simple protein into a complex one that damages the gut, it is killing us without us ever being aware of it!

The damage starts in the womb, when the proteins cross the placenta into the baby. On being fed gluten as it grows it is slowly being deprived of essential nutrients that would help in its growth and development. Some children are particularly vulnerable and show signs of malabsorption at an early age - others will not show up until later, or will only develop vague symptoms as they grow older that would not be recognised as due to Gluten Intolerance. Please get off gluten, and get your children off it too - now - before the damage gets any worse! As well as that - if you love your friends and family, tell them about this evil insidious poison.

[Ursa Major]

Ali, while some of what you say is very valid and good advice, some of it is not true. I have been gluten-free for two years and two months now (and off many other foods that I am intolerant to, and I rarely eat anything with sugar). My hypothyroidism is NOT any better, and I still need to take thyroid pills. The same goes for my adrenal problems.

It is possible that being gluten intolerant all my life and poisoning myself for 52 years (thanks to clueless doctors) caused my thyroid and adrenals to stop working right. But I believe that when you cause damage for that long, some of it is irreversible.

Once the celiac disease has triggered another autoimmune disease, most of the time you are then stuck with it and will have to keep dealing with it.

One exception is type 2 diabetes. I believe that almost in every case it is fully reversible on the proper diet.

[Gemini]

Ali, while some of what you say is very valid and good advice, some of it is not true. I have been gluten-free for two years and two months now (and off many other foods that I am intolerant to, and I rarely eat anything with sugar). My hypothyroidism is NOT any better, and I still need to take thyroid pills. The same goes for my adrenal problems.

It is possible that being gluten intolerant all my life and poisoning myself for 52 years (thanks to clueless doctors) caused my thyroid and adrenals to stop working right. But I believe that when you cause damage for that long, some of it is irreversible.

Once the celiac disease has triggered another autoimmune disease, most of the time you are then stuck with it and will have to keep dealing with it.

One exception is type 2 diabetes. I believe that almost in every case it is fully reversible on the proper diet.

I don't always agree with you, Ursa, but thank you for responding to this post by Ali. The problem with MY thyroid was not caused by malabsorption, it was caused by my immune system attacking it because of the underlying inflammation from gluten. Autoimmune disease, pure and simple. I, too, will have to take Levoxyl for the rest of my life, unless I become stupid overnight and stop taking the replacement hormone. I have improved the autoimmune reaction dramatically and driven it down almost to normal ranges BUT what was damaged before will not come back.

I do agree that gluten and sugar are not exactly the best thing most people should be eating but I also do not think everyone is at risk for damage from them. Not everyone suffers from malabsorption either. As far as Type 2 diabetes is concerned, I don't view that as anything but a lifestyle issue. It annoys me that they call it a disease when it is totally avoidable by eating right and exercising. Every Type 2 I know cheats on their diet constantly.....they would never make it as a Celiac!

[AliB]

Yes, what you both say is true, ans maybe I was a little heavy-handed in my interpretation, but essentially it is true that the damage is caused by the gluten intolerance.

I am not sure that an 'auto-immune' disease isn't really the Medical professions' way of explaining a disease for which they have no real explanation. The disease could just as easily be due to nutrient deficiency, as generally it is something that is not tested for.

Children with Celiac are usually picked up because they have failed to thrive. Why? It is certainly not due to an auto-immune response, but almost certainly due to a nutritional deficiency. Once they are started on a Gluten-free diet they generally then start to pick up and thrive.

Although it is a sad state to have to acknowledge I am sure you are probably certainly right when you say that some things will never recover. When the deficiency has reached a point where the cells or organs have started to break down, it is likely that they may never recover.

Many talk about being on a Gluten-free diet helping their gut to heal. Yes, that may be true, but it may never fully recover in certain aspects and there may always be absorption issues. Malabsorption is a recognised problem for Celiacs. Why then are the diseases that accompany it attributed to 'Auto-immune' responses rather than the malabsorption and ultimately nutritional deficiencies? Anemia is due to Iron, B12 or Folate deficiencies. Thyroid is due to Iodine and other nutrient deficiencies. Those are recognised deficiency-based illnesses. Who then is to say that any of the other many illnesses aren't also due to deficiencies? Who is to say that Gluten Intolerance is not behind these other illnesses due to gut malabsorption?

As a Type 2 diabetic, I would take issue with the lifestyle point. I have never overeaten. I have always had a good diet. I do not eat more than my husband, who is not diabetic or overweight. He has sugar in his tea and coffee, I do not. He has sweet cereal for breakfast, I do not. Yet I have always had a weight problem. I have always been fatigued. I know now that the weight problems, fatigue and all the other health issues I have had all my life are down to Gluten Intolerance.

Due to Gluten Intolerance my body could not cope with carbohydrates. Due to nutritional deficiencies my pancreas could not function properly, and diabetes was unfortunately an inevitable conclusion. Due to my large babies, I was told 30 years ago that I would eventually become diabetic. Gradually, my pancreas has gone from producing too much insulin (I used to suffer a lot with hypos) to producing little or none. As the deficiency has increased my insulin output has diminished. This is not about auto-immune, this is about nutritional deficiency and malabsorption. If this was about lifestyle then the only way I would control the diabetes without insulin would be to eat nothing but 3 rice cakes a day!

Yes there is a huge problem now with diabetes. But Gluten Intolerance is at the root of it all. The more Gluten people eat, the less efficient their bodies become due to deficiencies, the more likely they are to become diabetic. Some may be able to control it to an extent but eventually, as the deficiency increases it will become difficult, if not impossible.

My diabetes was just one manifestation of gluten intolerance. My husband's GI has manifested as Fibromyalgia, my friend's as Rheumatoid Arthritis. It doesn't matter what the disease is, they all stem from the same source. Gluten Intolerance!