Suspected Celiac - Life-Long Unexplained Illness!

[n1c0le]

I'm here to share my story!

I'm 23 years old, and I've suffered from an incredible amount of medical issues since infancy - all UNEXPLAINED or chocked up to hyper-sensitivity, being slow-to-heal, or making things up in my head due to anxiety. How silly!

Here's the list:

- bad reaction to milk - given soy formula as a baby - suspected lactose intolerance as an adult but I can really tolerate it most of the time.

- dark eye circles and pale skin

- terrible allergies - indoor and outdoor - developed oral allergy response to a variety of fruits, nuts, suddenly in my teens along with developing animal allergies. CHRONIC post-nasal drip. I am constantly hacking.

- itching, sensitive, rash-prone skin that easily reacts negatively to cosmetics / body products.

- serious psychiatric issues as a teen that exist now as terrible anxiety. I have OCD - treated with behavioral therapy, psychotherapy, and meds over the years, but med-free since my teens

- always had stomach and digestive issues that manifest as acid-reflux symptoms, and lower symptoms with periods of constipation, diarrhea, and everything in between. My digestive system is just NEVER balanced. I sometimes go through, when I'm stressed, periods of extreme pain and suffering in this area.

- had a few months where my limbs would suddenly ACHE, a red rash would come over them, and I'd be left with small

[GF Lover]

Hi Nicole and welcome. Yes, your story is all to common. I'm really glad your having the endo tomorrow. You are lucky that you have doctors that actually suspect celiac. Many others of us were considered hypochondriacs. I am 46 years old and just went gluten free this year. You should have a really good chance of resolving alot of your issues. Good luck, keep calm and let us know how your doing. Be well.

[n1c0le]

Hi Nicole and welcome. Yes, your story is all to common. I'm really glad your having the endo tomorrow. You are lucky that you have doctors that actually suspect celiac. Many others of us were considered hypochondriacs. I am 46 years old and just went gluten free this year. You should have a really good chance of resolving alot of your issues. Good luck, keep calm and let us know how your doing. Be well.

Thanks so much gluten-free lover! I too have been called a hypochondriac for years (doesn't help that I have OCD to support their suspicions), so it feels great to know I'm not alone and remember that this is all real.

[n1c0le]

I should also mention these details:

- dry itchy scalp

- dry itchy eyes

- lack of saliva despite being hydrated

- dizziness when getting up, vision will get black and splotchy from the edges and clear when dizziness passes

- foggy brained, memory loss, can't focus

- fatigue, exhaustion, but wake up in the night

- pretty extreme "growing pains" in legs as a child

[GF Lover]

I should also mention these details:

- dry itchy scalp

- dry itchy eyes

- lack of saliva despite being hydrated

- dizziness when getting up, vision will get black and splotchy from the edges and clear when dizziness passes

- foggy brained, memory loss, can't focus

- fatigue, exhaustion, but wake up in the night

- pretty extreme "growing pains" in legs as a child

Interesting you mentioned the dryness, especially eyes and mouth. Have they checked for any autoimmune issues? It is very common.

And doesn't the dizziness and spots drive you nuts? It is typically called syncope and there are many degrees of it. The test for finding the specific cause is usually a tilt table test, funny, I am having one Thursday. I think you may be my clone, lol.

Also, I understand the OCD very well.

Hang in there, be well.

[squirmingitch]

I wonder if the blood panels for celiac which were done on you were the full panel. Often the full panel is not done & that can certainly cause a false negative. here is the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

You can ask your doc to redo the test to include the entire celiac panel tomorrow when you are in for the endoscopy & the doc should take at least 4 -- 5 is better biopsies during the endoscopy.

Yes, it sounds like you may very well be celiac.

I hope you get the dx you are looking for. But whatever the results; you don't need anyone's permission to go gluten free for 6 months & see how you feel. Then you can challenge by eating gluten again. That will give you the truest answer of all.

Let us know how it goes tomorrow.

[n1c0le]

Interesting you mentioned the dryness, especially eyes and mouth. Have they checked for any autoimmune issues? It is very common.

And doesn't the dizziness and spots drive you nuts? It is typically called syncope and there are many degrees of it. The test for finding the specific cause is usually a tilt table test, funny, I am having one Thursday. I think you may be my clone, lol.

Also, I understand the OCD very well.

Hang in there, be well.

Hey! Its so crazy that things I've regarded as normal for years, like the dizziness and black spotted vision, can be potentially explained and fixed by one thing. Yes, doctors have suspected autoimmune but my bloodwork has always been normal. They considered celiac and one other autoimmune that I forget the name of now. Every test has always been negative, but I'm feeling like I'm on the right track with celiac suspicion.

[n1c0le]

I wonder if the blood panels for celiac which were done on you were the full panel. Often the full panel is not done & that can certainly cause a false negative. here is the full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

You can ask your doc to redo the test to include the entire celiac panel tomorrow when you are in for the endoscopy & the doc should take at least 4 -- 5 is better biopsies during the endoscopy.

Yes, it sounds like you may very well be celiac.

I hope you get the dx you are looking for. But whatever the results; you don't need anyone's permission to go gluten free for 6 months & see how you feel. Then you can challenge by eating gluten again. That will give you the truest answer of all.

Let us know how it goes tomorrow.

Thanks for your response! If my biopsy comes back negative I will discuss options with my doctor. He is amazing and I know he'll give me the right advice, and tell me to try gluten-free once we've tried everything to get a DX. I think the blood test was thorough because I trust him because he's a truly great doctor, but I can't prove it. I'll make a point of this at our meeting tomorrow!

Will let you know how it goes!

[n1c0le]

Hey guys,

So here's the update.

The doctor didn't feel that an endoscopy was necessary or would be helpful. He performed blood work - since new symptoms have developed and i haven't had blood work in over a year. We got some results immediately, which were perfectly normal. We're getting the rest by Friday.

He said he doesn't think it's Celiac, although he said it's still possible. He said neurological symptoms would typically develop at a much later stage of untreated Celiac - in other words, not at age 23. He said it makes sense that many doctors including himself have suspected autoimmune, because my symptoms match, but he says an autoimmune like lupus or RA would have showed itself on a blood test by now. He said this is a longterm issue because I've experienced symptoms in 3-4 body systems for several years, and that we know we're not waiting for this thing to develop - it's already here.

He said there's a possibility that we're dealing with something bizarre. He also said he wouldn't entertain the idea that it was psychosomatic until we'd tried everything in our power to come up with a definitive answer because I require a diagnosis. He stressed that I need a diagnosis several times.

The blood work he's running is more than a full panel - it is beyond. He said he's doing one test that shows if there's inflammation in the body AT ALL - not where it is of course, but any inflammation will show.

Any thoughts guys? I'm back to waiting another week although my doctor really proved himself as a partner in solving this mystery with me. He gave me hope that this can be figured out and treated. But I'm scared of the big autoimmune question mark.

[GFinDC]

Hi,

It's pretty simple really. If you go gluten-free for 6 months and your symptoms start to improve, then you have a problem with gluten. Whether you call it celiac or NCGI (non-celiac gluten intolerance) is not really important IMHO. The main point is to feel better right?

Having autoimmune symptoms that no tests can identify the cause of is something other people have reported here too. Celiac can mimic many other conditions because it can affect the whole body and there are many varied symptoms that can occur. Doctors are sometimes confused by celiac and test people for all kinds of things before finally identifying celiac. The tricky things is, the celiac antibody tests can't prove that you don't have celiac, they can only prove you do have celiac. So if the tests are negative, that doesn't prove you don't have celiac.

If you don't want to do the endoscopy that's fine. But the smart thing it is to go ahead and do the gluten-free diet for 6 months, and write down what you eat each day and how you feel. Your body is perfectly capable of telling you how it reacts to foods without a medical degree.

Celiac can cause malabsorption of nutrients, (vitamins and minerals etc). That can cause lots of symptoms. Sailors use to get various diseases from lack of vitamins going on voyages across the big water many years ago. They have names for them like beri-beri, pelagra, and others. It didn't take them decades to develop those conditions though. So your doctor is wrong saying that nuerological symtpoms can't occur fairly quickly. The Wiki link below talks about Beri-beri cases developing in 9 months at sea with a bad diet. That's 9 months in non-celiacs that they developed severe symptoms. 25 dead is pretty severe.

Open Original Shared Link

In 1883, Kanehiro learned of a very high incidence of beriberi among cadets on a training mission from Japan to Hawaii, via New Zealand and South America that lasted more than 9 months, resulting 376 cases of sickness and 25 deaths on a ship of 169 men. With the support of the Japanese Navy, he conducted an experiment in which another ship was deployed on the same route, except that its crew was fed a diet of meat, fish, barley, rice, and beans. At the end of the voyage, this crew had suffered only 14 cases of beriberi and no deaths. This convinced Kanehiro and the Japanese Navy that diet was the cause.Open Original Shared Link

Open Original Shared Link

What are the diseases caused by lack of vitamins?

In: Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link [Open Original Shared Link] Answer: It depends on the type of vitamin. For example, lack of vitamin A can cause night blindness, lack of vitamin B1 can cause beriberi, lack of B3 can cause Pellagra, lack of vitamin C can cause scurvy, and lack of vitamin D can cause rickets in children and osteoporosis.

[n1c0le]

Hi,

It's pretty simple really. If you go gluten-free for 6 months and your symptoms start to improve, then you have a problem with gluten. Whether you call it celiac or NCGI (non-celiac gluten intolerance) is not really important IMHO. The main point is to feel better right?

Having autoimmune symptoms that no tests can identify the cause of is something other people have reported here too. Celiac can mimic many other conditions because it can affect the whole body and there are many varied symptoms that can occur. Doctors are sometimes confused by celiac and test people for all kinds of things before finally identifying celiac. The tricky things is, the celiac antibody tests can't prove that you don't have celiac, they can only prove you do have celiac. So if the tests are negative, that doesn't prove you don't have celiac.

If you don't want to do the endoscopy that's fine. But the smart thing it is to go ahead and do the gluten-free diet for 6 months, and write down what you eat each day and how you feel. Your body is perfectly capable of telling you how it reacts to foods without a medical degree.

Celiac can cause malabsorption of nutrients, (vitamins and minerals etc). That can cause lots of symptoms. Sailors use to get various diseases from lack of vitamins going on voyages across the big water many years ago. They have names for them like beri-beri, pelagra, and others. It didn't take them decades to develop those conditions though. So your doctor is wrong saying that nuerological symtpoms can't occur fairly quickly. The Wiki link below talks about Beri-beri cases developing in 9 months at sea with a bad diet. That's 9 months in non-celiacs that they developed severe symptoms. 25 dead is pretty severe.

Open Original Shared Link

In 1883, Kanehiro learned of a very high incidence of beriberi among cadets on a training mission from Japan to Hawaii, via New Zealand and South America that lasted more than 9 months, resulting 376 cases of sickness and 25 deaths on a ship of 169 men. With the support of the Japanese Navy, he conducted an experiment in which another ship was deployed on the same route, except that its crew was fed a diet of meat, fish, barley, rice, and beans. At the end of the voyage, this crew had suffered only 14 cases of beriberi and no deaths. This convinced Kanehiro and the Japanese Navy that diet was the cause.Open Original Shared Link

Open Original Shared Link

What are the diseases caused by lack of vitamins?

In: Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link, Open Original Shared Link [Open Original Shared Link] Answer: It depends on the type of vitamin. For example, lack of vitamin A can cause night blindness, lack of vitamin B1 can cause beriberi, lack of B3 can cause Pellagra, lack of vitamin C can cause scurvy, and lack of vitamin D can cause rickets in children and osteoporosis.

Thanks so much for your response. I feel very strongly that Celiac is the likely cause of all of this - I've got a lot to point to that supports my theory - I don't think I could ask for MORE evidence. However, before I commit to gluten-free I want to do everything I can to get an official diagnosis. I am a pescetarian (eat fish but not other meats), suspected lactose intolerant (thinking now this might just be the gluten in the first place) and have allergic reactions to many fruits and nuts (thinking celiac may even be emphasizing these allergies). I don't know how cutting out gluten AS WELL would work for me - I might have to work some chicken into my diet or something. In any event, I think I'd need a dietician and don't want to go through all of this unless it's official - OR unless they run out of evidence / tests - then I'm 100% going gluten free immediately!!!!

Thanks again!!!

[GFinDC]

You are welcome. Another thing the doctor could check for you is your vitamin and mineral levels. If you are low on some of them that should be considered in the celiac determination.

[MitziG]

My celiac son developed depression, panic attacks, and peripheral neuropathy by the age of 7. Your doctor is incorrect in his assumption.

[frieze]

perhaps you should check Dr H, he opines that neuro issues can be from direct attack, not nutrient def. just google gluten ataxia...good luck