Not diagnosed yet, but could I have celiac's? (symptom list)

[kcducttaper]

I'm a n00b to these forums and am a 26 year old very frustrated dude with an engineering degree, no debt, a very successful career (so far), and am in pretty good physical shape. Ever since I can remember, My biggest complaint thus far is that I've always had some sort of "mental problem" going on weather that be depression, ADD/ADHD, anxiety, brain fog, mood swings, you name it. I've been trying to chase the brain fog specifically for the last ~7 years with some ADHD stimulants, anti-depressants, pretty much every natural supplement designed for serotonin/dopamine support, etc and, while some things help for a couple days, absolutely nothing sticks.

Here is a more complete list of most everything "wrong with me or my body" that I can think of at the moment:
- Brain fog (and accompanying motivation and attention issues)
- mood swings
- head tension (feel like a rubber band is stretched around my brain)
- depression / anxiety
- chronic small headache nowhere in particular - just everywhere, but with an occasional sharp pain that lasts for a couple seconds, then disappears
- sometimes almost feels like my brain just stops working and I suddenly lose 30 iq points and ~25% of my cognitive function (but never full-on seizures)
- lower back/vertebra, right sacroiliac joint, and right hip pain that can be excruciating and comes and goes with no real patter, but often lasts several days or weeks
- acid reflux that comes and goes
- get plenty of sleep (~9 hours), but never really feel fresh and rested
- within the last year or so, I discovered that I had become lactose intolerant to "large doses" of dairy (such as drinking a glass of milk), but smaller doses (like eating pizza) didn't trigger it
- I traveled out of the country and didn't take my daily multi vitamins and the mental fog got substantially worse, then lightened up once I returned and started taking them again
- I often feel better after taking a 3rd vitamin, but I don't see that as a long-term solution as 'overdosing' on some vitamins for a long time can be problematic
- occasional intestine pains, but often short lived. I mostly brush them off as normal, but it might be worth mentioning
- still have some acne and freckles on my shoulders, back, and chest
- energy comes and goes sporadically. Sometimes caffeine helps perk me up - sometimes, it makes me sleepy.
- Not socially 'sharp' and I can't just "shoot the breeze" like most folks
- difficulty recalling things I know that I know
- high blood pressure diagnosed in college (~22 years old) at ~ 145/95 when I was (and still am) a very physically active a fit person
- heart palpitations also beginning in college

I think that's a fairly complete list of things, though it may not be 100% complete. As I mentioned before, I've gone through all of the 'traditional' routes of depression, anxiety, ADD, bio-feedback, meds, etc and nothing is sticking. For the blood pressure bit, my doc did all the blood tests, did an EKG, ultrasound, sent me to a cardio specialist, and ultimately said "We don't know why your BP is so high, but here's more meds. By the way, you owe us $2,000 for telling you nothing useful".

I don't have any family history of gluten intolerance that I'm aware of, but it seems pretty much all of these symptoms are potential side effects of celiacs. Part of me thinks I finally found what the heck is going on, and part of me also just thinks that it's a bit of a fad and all of the symptoms are just falsely related to gluten intolerance because....it's a fad. Never-the-less, I've been going gluten-free since the beginning of August (about a week ago) and I have a doc appointment scheduled to get a blood test for ttg-iga, but that's way out in September. I know, if I do have it, my levels will still be quite high and easily detectable at that point, but I thought I'd throw my situation up here on the forums and see if I may finally be onto something after all these years.

[cyclinglady]

Stop!  If you suspect celiac disease, you MUST be on a gluten diet, yes, gluten diet in order to get the celiac blood and endoscopy/biopsy.  It has just been a week, so start eating donuts (or whatever) again.  I urge you to research more before you just go gluten free.  If gluten free, chances are that you'll get a negative result and you'll never really know if you have celiac disease or not.   In as little as two weeks antibodies can return to normal.  For others, it can take years, but you do not know where you stand on the spectrum.  

Open Original Shared Link

Open Original Shared Link

 

[kcducttaper]

Heck no! I'll keep going and see what happens. If I do have celiac disease, what's the "solution"? Don't eat gluten. If I don't have celiac's disease and am just sensitive to gluten, what's the "solution"? Don't eat gluten. I frankly don't care if I have celiac's disease vs just being sensitive for whatever reason (or a false negative) - the end result is the same and, as far as I can tell, "Celiac Disease" is nothing but a label for "sensitive to gluten, but we can actually quantify it".

[squirmingitch]

Then there is no point in you keeping that doctor appointment & getting the serum celiac panel.

[kcducttaper]

Confirmation. If it is indeed all out of my system by then, symptoms should drastically improve, which would ultimately confirm my suspicion anyways. If I'm still experiencing symptoms by then, I would be interested to see the results.

[GFinDC]

1 hour ago, kcducttaper said:

Confirmation. If it is indeed all out of my system by then, symptoms should drastically improve, which would ultimately confirm my suspicion anyways. If I'm still experiencing symptoms by then, I would be interested to see the results.

Hi kcductaper,

Some things to think about on the testing or not:

There are genes associated with celiac disease.  A gene test can tell you if you have the associated genes, but not if you have celiac disease.  About 30% of people have those genes in the USA.

If you decide to do the celiac testing later for some reason, you will need to eat gluten for 12 weeks for blood antibodies to be tested, or 2 weeks for endoscopy testing.  But the diagnosis criteria is elevated blood antibodies present and also evidence of intestinal lining damage.

Your children (future) may develop celiac disease at any point.  So if kids are in your future plans, it's good to know if you carry the genes.

Symptoms when resuming gluten after being off it for a while are sometimes more dramatic and unpleasant than before going off gluten  in the first place.

Recovery from symptoms varies among people.  Some people get better quickly, others it can take months to a year or more.

The newbie info thread has some stuff that may help.

It's a lot easier to get the testing done before going gluten-free, than going off and back on gluten after a period of time.

Nuerological symptoms are generally thot to be slow to improve.

Have you had your vitamin and mineral levels checked?

And welcome to the forum!

 

[Kurasz]

On 8/10/2016 at 5:45 PM, squirmingitch said:

Then there is no point in you keeping that doctor appointment & getting the serum celiac panel.

I will never get a diagnosis of celiacs. But i have been diagnosed with irritable bowel syndrome with gluten allergy. Is there really a difference?

[Fundog]

Yes.  IBS (sometimes referred to as spastic colon) affects the colon, most notably with spasms and inflammation.  Some people, especially those with hemorrhoids, might have some blood in their stools.  A lot of other foods, such as onions, garlic, peppers, and anything remotely spicy will trigger an IBS attack.  Triggers can be different for different people.  Even emotional upset and stress can trigger a flare.  Celiac Disease originates in the small intestine, with the production of antibodies specifically targeting gluten.   However, you might be interested to know that IBS is one of the underlying disorders encompassing the greater disorder known as fibromyalgia (FMS), which is now recognized as an autoimmune disorder.  Some people with FMS have found a reduction in symptoms by eliminating gluten from their diet.  

[notme]

ibs is doctor-speak, meaning:   don't have a clue what's wrong with you.....  irritable BOWEL syndrome refers to the small bowel as well as the large.   that NON diagnosis and lack of any effort for 25 years to pursue *why* my bowels were irritable just about killed me.   was also told i had 'colitis' ....  

kurasz:  you probably have celiac, the diagnosis that shall not be named lolz (because the medical industry can't make any money from a gluten-free diet)  many people on here were mis-diagnosed for many years - lots were told they had fibromyalgia but oops it was really celiac causing fibro symptoms.  lupus, ms, etc all misdiagnoses that were actually celiac causing symptoms.  now, if you have celiac with a wheat allergy, do you have an allergic reaction?  like, do you break out in hives or go into anaphylactic shock, etc?   there is something that they are just starting to research/recognize and that is mcas (mast cell activation syndrome) that has to do with a combination of celiac and histamine reactions (and there are crazy triggers, like excessive temperature change, chemicals, fragrances, air quality, pollen, etc)   it's not very common and it varies in degrees, but still something doctors don't even take into consideration....

[Jmg]

On 8/10/2016 at 9:21 PM, kcducttaper said:

I thought I'd throw my situation up here on the forums and see if I may finally be onto something after all these years.

Hi and welcome

No-one here can diagnose you of course but your list of symptoms matches many of those I experienced, most of which resolved or significantly improved on a gluten free diet. If I had to bet I'd say you're on the right track. If so, congratulations on figuring out something which took me a whole lot longer!

Having been in your shoes I know you'll be anxious to start feeling better as soon as possible and probably have a very low opinion of the medical establishment as well. However, I think you're making a serious mistake in dismissing the benefits of a confirmed celiac diagnosis. You're correct that there is no treatment that a positive diagnosis would bring, at least for now, but there may be one in the future and you may be precluded from accessing it. Children have already been mentioned. You may be hospitalised or incapacitated and want medical professionals to follow your diet restrictions, far more likely with a diagnosis. Doctors can help monitor absorbtion levels and correct deficiencies with a diagnosis as well as monitor intestinal damage. Finally, with the rest of your life ahead and myriad temptations to cheat, you may find sticking to the diet easier with the validation of a diagnosis. I had a negative biopsy but don't regret doing the challenge, because it was the reaction of my body to reintroducing gluten which reinforced my decision to never eat it again.  

You would find it a lot easier to stick on gluten till your appointment than you would going back on it later, when it can be far more unpleasant. Something to at least consider?

This by the way:

Quote

I know, if I do have it, my levels will still be quite high and easily detectable at that point,

is plain wrong. There is no uniform reaction time for antibody levels, some people its 6 months, others a few days. 

One further suggestion, if you stay gluten free, keep a food diary for the next few weeks to track what you eat and how you feel. Tying symptoms to diet changes can help you build an understanding of what is or isn't affecting you and it can help resolve those fears that you may just be buying into a fad. There's so many Open Original Shared Link that being as systematic as possible is a good way forward.

Whatever you decide, I wish you the best of luck and hope that soon you're feeling a lot better than you thought possible. 

[Jmg]

Oh and one other thing. Although $2000 is a pain in the arse and going through tests even more so:

On 8/10/2016 at 9:21 PM, kcducttaper said:

I've gone through all of the 'traditional' routes of depression, anxiety, ADD, bio-feedback, meds, etc and nothing is sticking. For the blood pressure bit, my doc did all the blood tests, did an EKG, ultrasound, sent me to a cardio specialist, and ultimately said "We don't know why your BP is so high, but here's more meds. By the way, you owe us $2,000 for telling you nothing useful".

It told them, and you, that you didn't have a problem with each of those systems. It excluded them and in doing so may have brought you closer to the truth. A lot of diagnosis is done through exclusion and that's one more reason to follow through properly on the test now because if you're ill in the future you may find a doctor needing to exclude celiac to prove another diagnosis. If gluten is a problem for you, going back onto it can be far more unpleasant than staying on it for a period of time. 

Sermon over! Sorry for preaching, but this is one that if I had my time machine built I would tell the younger me as well...

[miguel54b]

I had quite a few of the medical problems that you have before I figured out that gluten was the problem. I can’t do basic math or writing when I eat gluten also I get depressed, irritable, low energy, etc. The best route to go is to do an elimination diet and monitor how certain foods affect you. I eliminated MSG (Monosodium Glutamate), Nitrite, and oat based on the reactions that I get once I consume them. You must be disciplined on a gluten free diet, there is not such a thing as –It is just one cookie! If you can manage to go 100% gluten-free for three weeks and you see those problems going away, you will have a good idea if that is the cause of your problems. The blood test I did after being gluten-free for two years came back negative so the doctor just make me feel that I was crazy and making things up. I have a stool test done which came back with elevated igA also a gene test indicating I have two genes that code for gluten sensitivity. My lactose intolerance went away too, eating a lot of cheese now. Rash in arms? gone, Brown spots in teeth? Gone, Intestinal noises? Gone, Lack of bladder control? Gone, Constipation? Gone, and a lot others.