Brain Functions

[cdobbs]

hello, i need some serious advice. my father was diagnosed with celiac disease in may. so hes been gluten-free since then. everday he fights this mental issue and doesnt know what it is. its not depression. he says its like hes seperated from all feelings and emotions. he wakes up ok and within a matter of minutes hes feels like a zombie. its hard sometimes when you see him its like looking into blank eyes. theres no feeling or emotion but we know hes not depressed. the drs tried telling him it was depression and gave him many different drugs but nothing worked or made him have new symptoms that are worse. he works with alot of equipment and we ge very scared for him because its just dangerous with his mental clarity not there. he asked a speaker at a meeting not to long ago and it was stated that mental issues arent part of celiac disease. we were like what. his brain is in far left feild most the time. i dont know what else to do. everything i read said those brain fog symptoms shoulg og away after being gluten-free but its not happening. its getting worse. we are tired of drs fluffing it off and giving him a new pill to take bc nothing is working. i think hes missing some nutrient but i dont know who else to ask since we arent getting much help from drs. any suggestions or if you are going thru it plz let me know.

christi

[tarnalberry]

that sort of response is not - generally - connected with celiac disease, particularly in someone who's on the gluten-free diet. you might consider talking to a psychiatrist. note that this is NOT a psychologist, as a psychiatrist also has a regular medical background along with the psychology background psychologists do. he/she may be better suited to taking these sort of mental symptoms more seriously, but still have the medical background to help. good luck!

[gf4life]

I think Tiffany suggestion of having him see a phychiatrist is a good one.

Also you might want to have him re-evaluated for nutritional deficiencies. There was probably a lot of damage done to his intestines, so chances are that he still might not be absorbing properly after six months. There are a lot of nutrient deficiencies that can affect mental clarity. Since I am not a doctor I don't want to start naming specific nutrients. I think you should help him get to a quality doctor who is able to run the proper tests for deficiencies and not just throw pills his way. There are treatments available for deficiencies, but the doctors don't always think to check for them in their patients.

God bless,

Mariann

[tarnalberry]

That's a very good point Mariann. I had skimmed right over the fact he's only been gluten-free for five months at best, and he could well still be suffering from a fairly major nutritent deficiency.

[bmorrow]

I am new to this, but I have been reading the posts for several months. I have had stomach problems and anemia all of my life. I am 55 now and still do not have a diagnosis. Three years ago I started having severe reflux, constant bloating and diarrhea, bone pain and a rash on my legs and wrists. I was treated with acid reducers, Fiber, and several different prescriptions for IBS. My GP sent me to a surgeon one year after all of the medicines failed to help. He diagnosed severe Gerd, hiatal hernia and IBS. I underwent surgery for the hernia and the Gerd. After several months, I was still having the same symptons other than the Gerd. My stomach would still bloat and I had constant diarrhea. Six months after the first surgery, they discovered that I had gallstones, so I had another surgery.

After that surgery, I still had the same symptons. I was referred to a gastro. doctor that told me that I didn't have Celiac, Chron's or cancer. He told me that I had IBS and prescribed Questran, that did not help. I was still having all of the same symptons, including anemia and having lost 20 lbs in one year. I now only weighed 108 lbs. I finally talked another gastro. doctor into seeing me. While waiting for the appointment, one of my husband's friends, mentioned that my symptons were just like his wife's and that she had Celiac. I had never heard of this disease.

I started doing research on the internet and ran on to Entero Lab. I ordered the test panel and tested postive for Gluten sensitivity and intolerant for Caesin. The test results indicated that I had malabsorption also. I faxed the results to my new doctor and he called me that night telling me that we had the diagnosis. He still wanted to do blood tests, biopsopies for Celiac and microscopic colitis. All of his tests came back in the normal range. His final diagnosis was severe IBS, Leaky gut syndrome, malabsoprtion with a tendency for anemia.

He told my husband and me that Entero lab's tests were much more advanced than his, but he didn't state this in the letter to my GP.

I have been gluten free for six months now and doing some better. I recently had the York test for allergies, and have discovered that I am allergic to yeast and white fish. I started this week trying to avoid these foods.

I am very frustrated with the doctors and don't know what to believe.

My question to any of you out there is the following: Can I trust the Entero Lab results?

[Nadtorious]

CDobbs-

I would have to disagree with whoever told you that mental problems are not part of celiac disease. I can remember the last year I was in college before being diagnosed and thinking I had ADD because I couldn't concentrate. Even after I was on the diet for 8 months, I had a hard time focusing in school, or life in general. I know when I have a reaction anymore that it causes me to be depressed and "foggy", though not nearly to the extent it used to. How long has your father been gluten free? How strict is his diet? And if he's still missing out on nutrients, is it because he's not eating them at all or he's not absorbing them?

Good luck

Nadia

[tarnalberry]

I definitely didn't say that there isn't a connection to mental symptoms with celiac - I get the foggy headedness (though that's not really a psychological thing) and trouble concentrating. I think we can all agree that these are pretty common symptoms for some of us.

But the extent of the mental state "like a zombie" and "blank look in his eyes" and "separation of self and emotion" goes to an extreme that not only have I never heard about on a board or read about in the research but also doesn't match with the possible mechanisms of gluten affecting the brain (even the opiate model). Now, there could be an issue that he's having distinct problems processing the need for the gluten free diet and how he's going to handle it in his life, and is separating from himself (not terribly uncommon with medical conditions, as I recall from what I know of psychology).

Of course, I may have misunderstood the first posting, and that it really was just describing a "metal fogginess", but ... it seemed more serious than that.

[Nadtorious]

I'm sorry Tiffany-I wasn't trying to argue what you were saying either. I remember the 6 months before my diagnosis, in my sickest state, and probably up to 6 months after where I felt just "cut off" for a while. I think I understand what her father is going through. It seemed like the diet wasn't really working, other than my stomach problems kind of recesssing, because I didn't really know what was going on in my head. I think that was the worst aspect of celiac disease for me....More than the stomach pain or fatigue or anemia.....just feeling really empty without a reason. I remember thinking at one point that professional help might work, but never went through with it. Two years later I'm fine, but I look back at my fresh diagnosis days and cringe because of how I felt emotionally at the time.

Nadia

[kvogt]

Since going gluten-free 2 years ago, I'm now starting to have problems with other foods. York allergy testing reveals milk and soy (among too many others) are a problem. Soy seems to cause me significant problems with "zoning out" where my brain sort of stops/starts. It's not so bad as to be described as zombie, but I can see if I continue to consume soy I could get to that point.

Everyone with this disease should consider that gluten may not be the end of your troubles. And that substitute grains may carry their own problems.

Pay close attention to how you feel after each meal and try to isolate the problem food and/or try some food allergy testing. Foods that make you fee "nervous" or set you on edge might be messing with your central nervous system and cause you to have mental anomalies.

[darlindeb25]

i too have been gluten free now for over 3 years and i have noticed over the last year that other allergies are popping up and it just doesnt seem fair --contrary to the way things normally are, celiacs seems backwards too me--once we have gone gluten free, it would seem things would just keep getting better, but somedays i feel like things just keep getting piled on my plate, so to speak ---i have always been sensitive to scents, some would give me headaches and make my eyes run---now, i still get the headaches, at times my eyes run just like i am crying, my face starts to hurt and then i get this burning sensation and evenutally on either side of my nose along my cheeks my face swells slightly and it takes maybe 6 or 7 hours for this to all go away--just doesnt seem fair i still can have my dairy, but i do know that too much soy products dont agree with me--i am afraid to try oats, i love oatmeal i will never go back to that pre gluten-free life, i do feel so much better now, but some days ---i do tell people they just dont know how lucky they are to beable to eat anything they want any time they want --i do know also--i have always lived in the country and i have noticed lately that its just too dusty here for me now--some days are worse then others, but i cant wait to get moved out of the sticks --i love this forum

[Sharon C.]

Hi-

Sometimes, people go fishing in the wrong place, trying to link one disorder to another when they are in no way related. This happened to me once, when I was trying to diagnose myself. I was having two differnet symptoms, and I thought the symptoms were related. Well, they weren't. I was suffering from two distinctly different things and each symptom was unrelated to the other.

Check out the criteria for this disorder- does it sound like it can be your father? It may have nothing to do with Celiac:

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[Sharon C.]

Also, certain medications can turn a personality "flat". There are other mood disorders as well. Good Luck.

[ryeanddiet]

Christi,

I think a lot of celiacs or gluten-sensitive can associate with mood swings and migraines and mental fogginess but your father's symptoms do sound extreme.

As others have said, it is a lot to deal with and the symptoms last months even after going gluten-free (time your body needs to heal) so partly it could just be a lot for him and a psychiatrist may be a good avenue to try.

Another, as has also been stated, is to get regular bloodwork done to determine nutritional deficiences, iron, b12, folic acid and vitamin K are a few that are often associated with celiac. I had to have b12 and iron shots myself and found that I was very fatigued and unmotivated due to it that I was almost depressive in nature.

Also you may want to look into other auto-immune diseases that are often associated with celiac...maybe thyroid issues? (which affect mood and energy).

I'm not sure what to say if you're father's blank stare is attributed to mental issues and not fatigue or depressive like symptoms other than continue to search for a dr who will take your considerations into account and spend some time diagnosing .

(not a medical professional by any means, just sharing some experience and research)

Best of luck.

jen

[Guest imsohungry]

Christi,

I was just reading this post and a question came to mind...has your father ever had an EEG or MRI? (brain scans that show structure and function).

There are many different types of problems with a biological-not psychological root. Some of them are easier to control than others, but if he hasn't had any testing for possible physical/physiological brain problems it may be a place to start.

There is research being done now to confirm that autoimmune disorders/diseases may be related to neurological impairments as well. (i.e. epilepsy, ADHD, etc.)

It is worth looking into. Just my thoughts. -Julie

P.S. I was thinking that perhaps he could be showing signs of absense seizures or simple-partial seizures.

Good luck! Sending prayers...

[FreyaUSA]

Here is a good site for information on the connection between celiac disease and neurological problems. In countries outside the US, it's not considered strange. (This is also very scary stuff, imo. My father had this.) Don't waste your money on taking him to a psychiatrist. He's not imagining this.

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[FreyaUSA]

I found another site, this one is JNNP Online, the Journal of Neurology, Neurosurgury and Psychology, "A peer review journal for health professionals and researchers in all areas of neurology"

This article is "Gluten sensitivity as a neurological illness" written by doctors: M Hadjivassiliou, R A Gr

[cdobbs]

thanks. i know the obvious is to see a psychologist but i know my dad isnt depressed. i worry alot bc he works w heavy equipment and machines and he just cant think. we have recently limited him on dairy just in case that could be it, but there has got to be something triggering this in his mind. thank you freyausa, that article was something to look into. bc it is something else that could be it. we have recently check his v-levels, thyroid as well. all were normal. he did come back with the dhea if i am stating it correctly. well he had one test done and they said his levels were off the charts and then they did another test and said oh it normal. how confusing are we supposed to be. i would personaly do a 3rd test to confirm one of the 2 answers. this is just so frustrating. myself and 2 kids were diagnosed with celiac disease and i did this bc of my father being recently diagnosed and it being genetic. i dont want to see my kids go thru what he is. but it is hard no9t finding an answer to this problem. he is always stating he would be ok if he could just think. he is such a smart man and to see him question his answer to things is hard. he has never done this no matter if he was right or wrong. i dont know and thats what is hard. our family feels like if we cant find an answer for him soon hell go insane. if we could judt find a dr that will actualy listen instead of telling us take 2 asprin and call me in the morning. please keep him in your prayers. that is more help than any medicine or dr in the world.

thanks

christi

[Guest BellyTimber]

The schizoid per dis which someone mentioned is only a snapshot not a deeper reality and the snapshot you gave us sounds good enough.

My advice is, don't pathologise people.

Has he some spirituality of his own which he favours or would like to return to?

He is old enough to take his own responsibilities, in relation to machinery or whatever.

Being bullied or frozen out of situations will make anyone feel like that. Including what happened years back.

How about, if "complaining" about one's tummy, years and years and years of being told "not to be so stupid" or to "stop slacking".

Who can "stomach" that!!!

We have to go through nasty things beginning young. We have to choose decades later how to cope with that. I speak from current ongoing experience.

Best of wishes.

Michael

[Ruth UK]

I'm glad this post has come up again - I visited one of the sites recommended by 'FreyaUSA', and was it interesting!

My son has ADHD, Asperger's Syndrome and dyspraxia, and was tested a while back for 'gluten and casein sensitivty' (re 'opiate' theory of cause of autistic disorders), and came up as significantly +ve for 'gluten' and marginally +ve for casein. However, because this is 'new' research I couldn't get any help from my GPs, and so didn't action gluten-free/CF diet.

As soon as I get my biopsy result for celiac disease (blood tests are +ve) I'm going to get both my children checked out. I really do think undiagnosed celiac disease is responsible for a lot of 'our' (my son's and my own) physiological and neurological problems we've experienced. Only time (and further testing) will tell if I'm right.

Will try to remember to keep you updated.

[Janice C]

An article in celiac.com said that 70% of untreated celiacs have poor blood perfusion in their brains. Before I was diagnosed my brain felt like it had sand in its cogs. I did better at low altitudes-more oxygen. My brain got better after I stopped eating gluten.

[skbird]

I have definitely noticed a difference in my ability to think - not forgetting words mid-sentence anymore, not having so hard a time with debating with people now, either.

About ten years ago I was diagnosed as depressed, then bipolar, then bipolar with psychotic episodes, then anxiety disorder. I took many meds for these things and none of them ever seemed to help me at all. I went on a low carb diet about 3 years ago and cut out 99% of gluten just by chance and I have not been depressed at all, well, the minor depression you feel sometimes from everyday life, but that'sit in the past three years. I started eating more whole grains about a year ago and started having migraines again, insomnia, anxiety, IBS. Then about 4 months ago I put it together and cut gluten and have only had a couple of migraines, no insomnia, no anxiety, and only a couple of episodes of IBS, when I'd been glutened, since then.

Definitely DEFINITELY it affects mental states. I can't believe that at age 24 I was ready to believe I was going to be on meds the rest of my life for being bipolar, now here I am at 33 thinking wow, who cares about the last ten years, my life is beginning now!

Stephanie

[ianm]

Going gluten-free has definitley improved my mental state and outlook on life.

Ianm

[cdford]

That site was amazing. It was as though some of those articles were describing my life. I went for years until totally and permanently disabled before anybody even considered celiac as a possibility. The neurologist said he had not treated a celiac patient in 15 years, but he said it sure explained all those whacky neurological problems the other docs kept trying to say were all in my head.