Losing My Mind

[Tame82]

I have been having gastro issues for about a year and a half now. I am a 29 year old male.

Over the past year and a half I have been plagued with bloating, gas, on and off loose stool and constipation as well as alternating lower right and left side abdominal pain and a gurgling stomache.

I also have difficulty concentrating, trouble reading (more focusing on words while reading, it's like I can't id the words and often have to read sentences several times.), and am very forgetful. Last night I couldn't remember where the light switch was in the living room (I have lived there for years). The worst of this was about 8 months ago when I came home for lunch, made a sandwich, sat down to watch TV for 20 mins and completely forgot where I was, what time it was, and what I did after lunch. I proceeded upstairs to change out of my work clothes while trying to remember the last few hours of work (which never happened) before realizing I was home for lunch.

I often stumble over my own words and mish mash words together or sentences come out in the wrong order. "The fork is on the table" may come out as "The table is on the fork", or "thefortable". It is very embarassing. I used to be fairly eloquent.

I also have difficulty recognizing faces of people (mainly well known faces like celelbrities or people I have known for a while but do not interact with regularly but should very much know who they are by their face). I was in an airport recently while decending down an escelator I saw a sign advertising the airport. On the sign was a young (mid-30s) African American woman and I immediately recognized her as Lisa Cudro (SP?), the actress from Friends.

I have a rash/lesions on my back that were diagnosed as adult acne, but look an awful lot like pictures of DH I have seen online.

I have a constant feeling like there is a lump or food in my throat 30 mins - several hours after eating. This always eventually goes away until I eat again. It is very easy to vomit when I have this lump in throat feeling, even dry heave if it has been a while since eating, but there is no nausea.

My younger brother seems to be bothered by gluten and does not eat it. My father also seems to be gluten intolerant but still eats it sometimes and has major medical issues his doctors can not figure out (storke like symptoms with no stroke, speech garbles, headaches, ect...)

I used to get very bad headaches but I have not had one in over a year (major headache that is).

I have had a blood test screening that came back showing me IGA deficient and was referred to a GI specialist. I have an endo/biopsy coming up and am desperately hoping for a some kind of conclusive diagnosis so I can get these issues taken care of.

I am terrified the endoscopy/biopsy will not show anything and my gastro will tell me I have IBS or some other collection of symptoms with no real recourse. I am almost sure this is a gluten problem as my little-brother and father have similar issues and gluten intolerance is genetic.

Any input is valued.

Tim

[cameron]

"Over the past year and a half I have been plagued with bloating, gas, on and off loose stool and constipation as well as alternating lower right and left side abdominal pain and a gurgling stomache."

I am 39 and have these exact symptoms. Not so much the memory loss, although I am forgetful my wife says. I used to have a very bad stomach knot feeling high up in my stomach almost behind my sternom. This caused me a lot of pain and axiety. My GI doc diagnosed me with stress and axiety. He did an endoscopy on me and found everything normal. He referred me to an Internal Medicine doctor. She put me on some meds, but also put me on a gluten free diet. Eventually I stopped the meds and strictly went with just gluten free. My knots in my stomach went away completely, but I recently incurred these additional stomach problems exactly as you described.

If someone has a comment for that for me, I would be greatful.

So I am guessing it is not the gluten for me at this point, but very well could be for you. Luckily, my doctor has celiacs, so she knew almost right away it could most likely be celiacs. I am going back to her next week, as no official diagnosis was given to me. I plan on bringing up these exact symptoms that you and I seem to have, and see what she says. As I know it is not stress, and my anxiety has gone away with no gluten, so that might have been in correlation to the disease.

My advice, just get off gluten completely. Get an endoscopy, as if there is any internal damage to your stomach lining, they can do a scraping and diagnose you properly from that. Your stomach will heal in time, sometimes not 100%, but it will heal. Even the slightest amount of gluten can cause damage, so stay away until the doc clears you. They might do an antibody test, but seems hard to diagnose celiacs, at least that is what I am finding out. It could be possible that your other symptoms in time could fade away, if you truly have celiacs. It is genetic, so if your father and brother have it, you very well could as well. Nothing to worry about, just a lifestyle change. Actually a good one. You will feel better if you are intolerant to gluten. It took me about 3 weeks to start feeling the effects of being off it.

It is also possible that even if you have celiacs, you could have some other intolerances as well, possibly stemming from eating gluten most of you life. You need to get yourself checked out thoroughly and make sure you get a food allergy test. See a GI and an Internal Medicine doctor and have them coordinate together. They will figure it out. Maybe do search for doctors who are familiar with celiacs. You could have other allergys you dont even know about. I hope this helps out some. Just dont stress, you are young and I am sure it is nothing worth losing your mind over.

[Skylark]

Hi and welcome.

It sounds like you may be suffering from neurological symptoms from gluten. With neurological autoimmunity EVERY SINGLE BLOOD TEST CAN BE NEGATIVE!!! They are only looking for the GI antibodies. You may have a negative biopsy as well, if the damage is primarily in your skin and nervous system and not your gut. Even the genetic testing may not help as we see a lot of DQ1 and DQ6 folks -- so-called non celiac genes -- with neuro issues from gluten around here.

I would strongly suggest you simply go gluten free and see if you feel better no matter what the tests say. You do not need anyone's permission to try the diet and with gluten-sensitive family members and low IgA you have plenty of risk factors for celiac. If your symptoms start to resolve gluten-free, you have your diagnosis. Also, being on the gluten-free diet does not interfere in any way with medical followup of your neurological symptoms if you still have issues gluten-free.

You could see a dermatologist about a skin biopsy for DH, but people have trouble finding dermatologists who can identify DH and know how to do the biopsy correctly. If the rash is DH it will go away if you eat gluten-free and low iodine.

One thing we see around the board is that you must be very, very strict on the diet to get neuro issues to resolve. Traces of CC or occasional cheating like your father does will not resolve the symptoms.

Also with the lump-in-the-throat, you should get your thyroid checked. The memory problems can also be caused by hypothyroidism and a lot of gluten-intolerant folks have thyroid trouble.

[Tame82]

I want to get a full range of allergy tests done as well as the thyroid test but my doctor seems reluctant to order more than one test at a time. The gluten free diet is difficult for me as I am active duty Military and have no real choice to eat gluten free while deployed.

Thank you both for your feedback, it is welcome.

Tim

[Skylark]

I want to get a full range of allergy tests done as well as the thyroid test but my doctor seems reluctant to order more than one test at a time. The gluten free diet is difficult for me as I am active duty Military and have no real choice to eat gluten free while deployed.

Thank you both for your feedback, it is welcome.

Tim

You're welcome. Thank you for your service! I'm sorry to hear that soldiers with gluten issues can't necessarily get safe food.

I'm surprised you're not getting thyroid testing; gluten intolerance/celiac is a common cause of thyroid disease. I think perhaps the best route if the biopsy comes back negative is to see if you can find a dermatologist familiar with DH and get the skin biopsy. If you can get some kind of solid documentation of celiac disease you'll at least know what to do when you are able to eat gluten-free. Good luck with it all!

[AVR1962]

Tim, your symptoms are very much what I was experiencing. I had some digestive issues but what stood out was the lack of concentration and memory, the pain in my feet (pins and needles), vertigo, blurred vision/double vision, bug crawling sensation on the skin, muscle spasms, etc. Sound familiar? This is nerve damage from a lack of vitamin and mineral absorbtion. It is debilitating and cause lots of damage.

My advise here is that you could continue with the glutens and try to do the tests, the tests may not give you the results you need. You need help, the sooner the better as your body needs to heal. The sooner you catch it the better. I was having nuero issues 2 years before my diagnosis, this is not good as alot of damage took place in the meantime. I'm afraid if you wait on the advise of your doc you may not get better.

I would suggest trying a gluten-free diet. Read lables. Find out what is good and not acceptable, there is a list on this site. Remember the only grains you can eat are rice and corn, or gluten-free oats and buckwheat. I would also go dairy free for 2 months. Reason being is that once the villa are damaged other systems in the body break down and dairy becomes one of those foods we cannot tolerate many times until the intestines heal.

Then, look up everyone of your symptoms and in the search add "vitamin deficiency" and you will be amazed what you will find. The one thing I would highly suggest to you is purchasing WSN Nerve Support which is a B complex. It is not cheap but it will help you with alot of your symptoms. I have tried the coenzyme B complex that many here take but it is not enough for me and the regualr B12 is not either. This is the only product I have so far found relief from.

Are you dizzy? That was one of my worst symptoms and the hardest to find a solution for but by doubling my vit D, I am now (after 8 months) getting some relief. I am a 48 year old female, weigh 145 lbs and am taking 10,000 units of D daily.

Any burning in your stomach?

My memory was so bad at one point that I forgot how to use ATM machines. I teach musioc and some of the theory I have taught for years was gone. I would not remember conversations I had. I would buy fixings for a second meal when I had things already planned out at home. It was crazy. I thought I had Alzheimer's, it was kind of frightening. That's gone now

I'll put this in here too incase you find it helpful. This was my own research that I saved to my computer:

Vit D- to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, joint pain, poor concentration, memory

B for tingling in hands or feet, hot feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium for confusion and poor memory, fatigue, disturbed sleep/insomnia, irritability, muscle twitching, muscle contraction. GOOD

Zinc- supports immune system, hair loss, taste.

Potassium- regulate nerve transmissions and muscle contractions, restless legs, charlie horses

[AVR1962]

I want to get a full range of allergy tests done as well as the thyroid test but my doctor seems reluctant to order more than one test at a time. The gluten free diet is difficult for me as I am active duty Military and have no real choice to eat gluten free while deployed.

Thank you both for your feedback, it is welcome.

Tim

Just read you are deployed. This is going to make my advise a bit harder. You can still avoid gluten in the chow hall and if interested in the supplements perhaps a family member would be kind enough to send them to you. No need to be concerned about your random urine tests with the supplements. My husband was AF 27 years and was scared to death to take anything because of the tests.

[Di2011]

I was in the Navy for 7 years and although I never defined my problems as gluten related ( I thought I was "normal" ) I know from hindsight that bread and pasta was a turn off. I use to eat lots of things by a whole plate of it:

I would often eat a whole plate of broccoli (when it was on the menu the cooks knew they would have to chuck it anyway)

If there was rice I would ask for 3 serves or at least a very big serve

When there was fresh fruit I would horde it (probably against regulations)

During night shifts I would always seem to be the one to offer to go visit the galley to get coffee/toast which is a great "quiet time" in the galley to get to know the cooks. They liked an unexpected visit from someone in the quiet hours and they ended up looking after me when a plate full of greens was what I wanted (in hindsight probably "needed").

I did all of this with absolutely NO idea that gluten was a problem for me. Before this I had been at boarding school and hid under beds to avoiding getting caught missing breakfast(toast/cereal). After that I spent 4 years at uni on laxatives in what I now know would be considered in the anorexia/bulemia disorder range((Digestion/Constipation related I always considered must be "normal"))

I was at school 20+ years ago, Uni 15+, and Navy was 10+ and in hindsight I seemed to avoid gluten for a long long long time before I got to a job in a bakery paying "low income" wages that sent me to the extreme at 38 y/o. I loved working in the bakery, hate that I had to leave it but glad my history is now making some sense.

DONT let military medical dictate your health. I was always under the illusion that we "couldn't" see other medical sites/professionals ((I am in Australia; and this was even after they had me at Emergency during my initial Navy training - after 4 months damage of stomach ulcers)). As soon as you can you should DO it. DO it until you feel GOOD. Do what makes you feel good and be very conscious of what is/isn't working for you.

What good is serving your country if you can't?

[Tame82]

Thank you all for your replies and advice. I have an appointment in two days for my scope/biopsy but am also going to demand an allergy screening and more blood tests (IGG and DGP?) I will look into finding a dermatologist that is familiar with DH when I get a chance.

I don't remember if I mentioned my eye twitching before, but I have read it may be caused by a vitamin deficiency.

I will update after my appointment.

I am not deployed currently, but I do deploy frequently and would like to get this sorted out before my next one.

Tim

[Tame82]

I had my scope yesterday and was told not to expect results for 5-7 days. I didn't have a sore throat after the scope like he told me I would so that's good. I do have a slight nagging pain in my lower left side though, I guess taking small patches of tissue from my upper intestine can't feel good can it?

Just crossing my fingers now for some kind of definitive result. If not I guess I will go back for more blood tests (as only IgA was run).

He told me he took 9 samples, I requested as many as he could (Was hoping for 10+).

[Skylark]

Nine samples is more than a lot of doctors take. I hope you get your answer!

[Tame82]

I got the results back. Biopsy came back completely normal. I am not sure how to proceed. I have doubts my extra blood tests will come back with anything now. I guess I will wait and see.

Thanks for the support.

[Skylark]

I got the results back. Biopsy came back completely normal. I am not sure how to proceed. I have doubts my extra blood tests will come back with anything now. I guess I will wait and see.

Thanks for the support.

I know going undiagnosed is frustrating, but it's good that your biopsy isn't a mess. Make sure you ask for the deamidated gliadin peptide IgG blood test. It's the latest test and the most sensitive. They should also run TTG (tissue transglutaminase) IgG.

After your blood testing, the next step is to get off gluten while you're stateside since gluten intolerance runs so strongly in your family. If it helps tremendously, you might need to start befriending the cooks when you are deployed.

[Tame82]

I had more blood taken last week, I had my doc order everything but the IgA I already had. They took 5-6 vials. My GI is convinced they will come back with nothing due to my scope/samples being negative, but we will see.

Thanks again for the support.

[LOWNskater52]

Dude I feel ya.

My most prominent symptoms are neurological but had plenty others too. Dizziness, anxiety, depression, lump in throat, difficulty concetrating, crazy new allergies, terrible eczema (rash) on my foot and right hand, heartburn and tons others.

I am on week 2 of going gluten free and alot of things are better and alot of things haven't changed. Just stay strong and be careful what you eat if you can.

[Tame82]

I got my blood work back today, sheet in hand and not much to say from it

Type Result Norm

IGG 1056 649-1634

IGA 71 73-358

IGM 109 53-251

Lipermia index 42 0-50

icteric index 1 0-15

IGD 15 0-179

GLIADIN AB In transit (not back yet)

GFR >60 >60

TTG IGA <3 <5

IMMUNOGLOBULIN A 70 81-463

ESR 8 0-10

I am not sure which of these is relevant to gluten other than IGG IGA. IGA is a bit low. I am thinking Gliadin AB is the one I really want a result from, but it is not back and my doc seems pretty sure I am not celiac/gluten intolerant with what he has. He is saying it's IBS.

My brother also just got his test results back, his doc told him he is allergic to gluten, corn, soy, nuts, and shellfish.

[domesticactivist]

You could also have a biopsy done of the clear skin directly next to the sores you suspect as dermatitis herpitiformis. I'm not sure though, if you have low overall IgA if that means you'd not be able to get a good result. It's worth asking the folks on the dh board.

[mushroom]

I don't see either the tTG (tissue transglutaminase) IgG, or the DGP(Deamidated gliadin peptide) IgG listed as tests having been done. These are the two tests which would most likely pick up celiac in someone who is IgA deficient. The tTG IgA is guaranteed to be negative.

[Tame82]

I don't see either the tTG (tissue transglutaminase) IgG, or the DGP(Deamidated gliadin peptide) IgG listed as tests having been done. These are the two tests which would most likely pick up celiac in someone who is IgA deficient. The tTG IgA is guaranteed to be negative.

You're correct. I am pretty annoyed as I gave my doctor a list of tests to run based on my previous result of IgA deficiency. The list included tTG IgG and DGP IgG. However it seems he didn't have those done so much as stuck with IgA tests and one overall IGG. I guess I get to try again.

Thanks for catching that.

Tim