Could This Be Celiac?

[Sitius]

Hi all, I've been trying to get a diagnosis for a slew of strange symptoms I've been suffering from for nearly a year now. I've had a CT Scan which came back negative and countless blood tests including one for celiac. In the last few days I've read a lot about celiacs disease and I've noticed that quite a few of my symptoms fall under it, so I thought I should ask you guys for your point of view!

Symptoms

- Bizarre headaches, the slight irritation is centralized to the temples at the side of my head.

- Occasional burning sensations felt at the back and top of my head.

- On a daily basis I hear a "clicking" sound (think of the sound of the spark your finger makes with a charged object) coming from my head.

- The largest result of these headaches is a confused state of consciousness (Brainfog?) where nothing feels as though it's entirely happening. I feel as though I can only visually concentrate on one object at a time, and the speed of visual interpretation and reaction time is severely crippled. Intellectual activities have become very difficult. Several months ago this "Brainfog" would come-and-go for, and now it is 24/7, day and night.

- Indigestion which makes it feel as though my stomach is full of "air."

- As a result, I have to burp, belch, and fart to get a sense of "release." When I do all of these things it's as if something inside my stomach is making a noise prior to the burp/fart. Also: this is not conventional burping, it sounds like liquid inside my throat is gargling at the same time.

- After meals (full ones or just snacks) the skin at my waist where ones pelvic bones protrude feels very sensitive. This is the find of sensation I'd imagine a person who is starving or malnourished might feel.

- I also get constipation, and when I have bowel movements it never feels as though I am entirely "finished" but no matter how hard I try to get more out it doesn't come, so I am forced to thoroughly wipe and move on.

- I also get occasional discomfort, irritation, and itchiness in my behind area. As well as small bits of blood on toilet paper after wiping.

- Miscellaneous things i've noticed: twitching of random muscles & left eyelid, small bits of blood left on kleenex's used to sneeze, loose light brown stools, occasional green stools, very small misshapen stools, etc.

thank you very much for your time!

Kurt

[starrytrekchic]

The noises in the head is likely this: Open Original Shared Link I have the same thing some mornings when I'm half-asleep. I get the explosions, but static noises are listed too. I don't think it's related to gluten.

You should have a colonoscopy and endoscopy both done. The blood could be celiac, but it could also be something like ulcerative colitis.

The brainfog one sounds more like depression, which does occur with celiac. Depression can seriously mess up your visual interpretation as well as brain functioning.

Was the blood test for celiac negative? It could be negative and you still have it. Have you had your vitamin/mineral levels tested? That might indicate if you have a malabsorption problem. If you haven't yet, you should talk to a gastroenterologist and maybe schedule a colonoscopy/endoscopy with them.

If you have celiac, gluten-free may help the headache, but you also might need to see a neurologist there too, if it doesn't.

[Sitius]

Hello & thanks for responding.

I don't think the brainfog is depression, as I am fairly happy despite my symptoms. When these neurological symptoms first occurred last summer they came in brief spurts which were very irritable and would go on for several days, then stop, then return. Since then the neurological symptoms have mellowed out yet my focus (specifically visual) is significantly hampered on a 24/7 basis.

I've seen a Neurologist and a Gastrointestinologist, the former has ordered an EEG (negative) and a MRI (getting results from this on Thursday), and the latter ordered a Colonoscopy suspecting I might have IBS. He also scoffed at the idea that my neurological symptoms are inextricably linked with those in my gut (which they are).

The blood test for Celiac was negative, and I'm not entirely sure whether i've had a blood test for Vitamin levels, but I probably have seeing as I've gotten about 15-20 different tests done since last august.

Also, I'm just starting a Gluten-free diet today, and I'll keep this thread updated with my results. Theoretically speaking, if this is celiac and I have been damaging my intestines to this extent for several months, could the process of repairing villi take an extended period of time?

thanks,

kurt

[starrytrekchic]

If he's doing the colonscopy, have him to the endoscopy at the same time. No sense in doing one without the other, especially as you also have upper digestive problems.

IBS is not a diagnosis! It's a collection of symptoms. I'm not too sure about your gastroenterologist, especially if he doesn't realize how closely related neurological and gut problems are.

The intermittent then increasing frequency in symptoms can happen with celiac. Can you post your test results from the celiac blood test? Not all doctors are great at reading them correctly, and like I said above, you do get false negatives with them.

Recovery varies. I think 6 months to 2 years is normal. Several months isn't too long--the average time to diagnosis is 11 years--but your body may be reacting strongly, or you may have had years of celiac without symptoms (silent celiac). It also depends on your healing ability and other such things.

Edit: Oh, and welcome to the forum!

[Sitius]

My Colonoscopy is in about 3 weeks, I suppose I could mention it to him at the apt. but he's something of a cowboy doctor and I doubt he'll comply.

As for my Celiac test results, I'll try and get them from my Neurologist this thursday.

Re: Recovery, If my neurological symptoms are connected, then does the above time-frame also describe how long it will take for my brainfog and what not to go way? (I ask this because I've applied to study abroad come September and I will not be able to go unless I figure this out.)

Thank you!

[mushroom]

It is possible to have positive biopsy findings with negative blood tests. Then again, maybe those tests were not so negative?? Do get and post. I would definitely request the endo procedure at the same time as the colonoscopy. Two for one, so to speak. It's easier for the patient, cheaper for the insurance, but less money for the doctor

Individual recovery times vary so greatly that it is difficult to predict, but I would think you would see an easing of brain fog within four months. Maybe not all the way, but.....

[Sitius]

Hi all,

I just got back from my neuro appointment and received word that my MRI was negative. My Neurologist has concluded his profiling of me and thinks the problem is either gastrointestinal or psychological (I really doubt the latter is possible-- I'm happy in spite of all this). I asked about my celiac bloodtest and he said it was "less than 5 and normals were less than twenty," I hope this helps. I also quickly went into my G.I. doctors office and found that my colonoscopy is actually a sigmoidoscopy-- will this do the job?

Otherwise, I have been Gluten-free for about 2 1/2 days now and have noticed small changes with my G.I. problems: my incessant burping (often after consuming a meal) has become less violent and intensive. Before it felt as though my stomach acids were in my esophagus and "gurgled" while I burped, now they are closer to resembling normal burps (but they still come after my stomach makes a noise first). Apart from that, the only stools i've made have appeared a little more solid than normal (and a little green as well), and I have a intuitive (and perhaps dubious) feeling that my gut just feels a little cleaner than usual.

Help appreciated. Sorry if I sound a little inarticulate, brainfog 'n all.

[mushroom]

A sigmoidoscopy is a little like a mini-colonoscopy. It only reaches the lower half of the colon and is useful in cancer screening for polyps and causes of rectal bleeding. He may be able to see Crohn's disease or ulcerative colitis - I really don't know.. Generally if anything is found with a sigmoidoscopy they then go ahead and do the full colonoscopy. It won't tell you anything about celiac disease - and he obviously does not believe that is what you have.

However, it is encouraging that you are already starting to notice some improvement on the gluten free diet. It does take a while for this to happen - it is not an overnight kind of thing. Your "gut" feelings are often right - I would go with them for now. Your blood tests, assuming they ran a total IgA test, were definitely well within normal range and you may well test negative on endoscopy as well. At this point I believe it is important to strictly follow your gluten free diet and look for continuing improvement.

[starrytrekchic]

When I had my colonoscopy to check for Crohn's, my gastro said Crohn's most often appears in the large intestine right where it connects to the small intestine, so if he's correct, your gastro might not be able to detect it from that procedure. I believe UC can occur anywhere in the large intestine.

You really need to push for an endoscopy (which checks the small intestine for celiac). Switch doctors if you have too. Some of your symptoms are very similar to mine that cleared up gluten free, and the blood tests are often wrong.

Also, these illnesses sometimes co-occur, especialy Crohn's and Celiac, so testing positive for one doesn't rule out the other. You obviously have something wrong in your upper digestive track, and you need your esophagus, stomach, and small intestine all checked out (which is what the endoscopy would be for.)

[Sitius]

When I had my colonoscopy to check for Crohn's, my gastro said Crohn's most often appears in the large intestine right where it connects to the small intestine, so if he's correct, your gastro might not be able to detect it from that procedure. I believe UC can occur anywhere in the large intestine.

You really need to push for an endoscopy (which checks the small intestine for celiac). Switch doctors if you have too. Some of your symptoms are very similar to mine that cleared up gluten free, and the blood tests are often wrong.

Also, these illnesses sometimes co-occur, especialy Crohn's and Celiac, so testing positive for one doesn't rule out the other. You obviously have something wrong in your upper digestive track, and you need your esophagus, stomach, and small intestine all checked out (which is what the endoscopy would be for.)

Hey guys. Sorry for the slow reply! I did end up getting a Endoscopy (including a check for celiacs) and a Sigmoidoscopy. I'm still awaiting for word back, as my follow up appointment is June 2nd. The only other update I have is that the parasite I thought I got rid of I actually still have and failed to get rid of, except the species is a minor micropscopic one called Dientamoeba Fragilis. I've read about about it online and people suggest that it causes more problems than doctors currently believe but I could find little evidence of it being causal of all my symptoms. I found two people suggesting that when they rid themselves of it that their concentration bettered but even so-- they did not word it in such a drastic and debilitating way which would sync with my case. I'm currently treating this parasite and it's likely gone by now (with none of my symptoms having changed).

Question: Isn't Krohn's disease supposed to come with abdominal pain? Cause I have experience no abdominal pain except I notice light palpitations (kinda like a heart beat) in my stomach area-- kinda on the left and right side of my torso.

Thanks all! and I hope all of you are having a lovely spring.

best,

kurt.