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Have You Been Told It Is All In Your Head?

lovechild

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lovechild Rookie
lovechild
Posted

I have been about 10 weeks gluten free now after self-diagnosing myself. My family doctor would not re-test me for celiac (after he had tested me 3 years ago) even though I have a huge list of symptoms. Since I was not even certain what tests my Dr. did or if I was even eating a gluten heavy diet at the time, I decided to do my own trial and see how I felt. Three weeks strict gluten free and I had already lost weight, my bloated belly was almost gone, I had an abundance of energy, my digestive issues all cleared up and most of my body aches were gone. I felt almost like a new person. 

 

Then one day about 6 weeks ago I had some watermelon and got really sick from it. I was in pain for days and along with it came all of the bathroom problems again. I decided to stay away from watermelon. Then I had a stew with some onion in it and another time some gluten-free onion rings. Same problem as the watermelon. Then dairy was giving me problems. So I went off that as well. Now I find that am also sensitive to any sugars. One little amount of fructose or sorbitol sets me off.

 

Because of all this now I am on this restricted diet and I am having trouble finding things to eat so I can stay healthy. One of my friends knows about my food intolerances and today she told me she thought that maybe it is not my body that was having problems but maybe all of the symptoms I am having are all in my head or that I am think I am having these reactions, but I am really not. She said maybe someone should give me a placebo to see if my reactions are real or not. I was offended as to me these symptoms I am having are very real and I would like nothing but to feel good again. I hate having to cut out my favorite foods and be on such a restricted diet. It makes things very complicated and stressful.

 

I tried explaining to my friend about gluten intolerance/celiac and that sometimes some people can have problems with other foods after they remove gluten from their diet but she just doesn't understand. I tried to show her info on leaky gut as well.

 

Also, I recently had bloodwork done and I am on a bunch of supplements including Armour Thyroid medication. My results showed that I have low ferritin, low B12, low testosterone, high homocystiene, hypothyroid symptoms, and low fasting blood sugar (hypoglycemic).

 

Did you end up with multiple intolerances once you went gluten free? How do you deal with people who think you are making everything up?

 

Thanks a lot. :)

 

 

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notme Experienced
notme
Posted

they think you are FAKING DIARRHEA ?  how is that even possible......

 

people are idiots.  i'm so sorry.  

 

i'm sure people thought i had some kind of eating disorder before i got diagnosed.  my mother-in-law is a (here have a cupcake and get over yourself) jerk about it still.  who cares - notme!  lolz

 

i have been handing out the 'food journal' advice today all day so:  keep a food journal and write down everything that crosses your lips - try to eat simple and 'clean' no fancy spices and ingredients.  i hate watermelon, so nobody should *ever* eat it <just kidding 

jhol Enthusiast
jhol
Posted

hi,

 

just to let u know ive gone through all that youve just written down. i went gluten and dairy free and within weeks all my bloating ,sickly feelings, joint pain ,reflux, dark repetitive thoughts( i never had the gastro symptoms)had gone. then i realised i had other problems. eggs are gone coz i never got on with them, soya just didnt agree with me, nightshades caused joint pain and made the rash on my hands and face flare up.most fruit gives me what i thought was oral allergy syndrome, and some veg doesnt agree.

 

all my tests for celiac were negative,and allergy tests were negative too. the nurse there said she would send me to speak to a cognitive behavioral therapist because of my restrictive diet. id retested the foods before i went just so i knew i wasnt making it up!! i declined her offer...

 

im now looking into histamines and salicylates as a solution

 

dont really have any answers for you im afraid. i have been avoiding situations that involve foods. and trying not to get into any conversations about food.. soz i couldnt be more help.

bartfull Rising Star
bartfull
Posted

Tell your friend that your symptoms are no more psychosomatic than her rudeness is. Both are very real. :angry:

IrishHeart Veteran
IrishHeart
Posted

I usually do not bother to explain myself to anyone. .

No one I know who saw me dying from undiagnosed celiac would ever dare

mention "you're making this up" to me, but here is something you could ask:

 

"Why would I make something up? what would be my motive?"

 

and 

 

"Who the hell makes up hypothroidism, anemia and hypoglycemia?" That's not possible.

 

People who question your symptoms are not your "friends". Real friends are compassionate and look to understand what you are dealing with on a daily basis.

 

You do not "end up with multiple intolerances" hon---you had them all along. They just become more evident as you get off gluten, start to heal and see other things you may have not noticed before when you felt so crappy. You can resolve them as your gut heals and use an elimination diet to get it sorted out.

 

Hang in there. It takes time to resolve these issues and so, just stay the course.

 

PS

 

I love watermelon and I enjoy it often, but right now, it may just be too much for you to digest. My hubs cannot eat it, or any melons or cukes (same family of foods) Gives him stomach aches.

 

Take it out and try again later down the road.  Keep it simple for now. :)

1desperateladysaved Proficient
1desperateladysaved
Posted

People use to think I was making this stuff up.  Some still do.  However, now they often note my"red face" shortly before I start noting my other symptoms.  I have rashes at times which are very visable.  I spent an evening in a hotel bathroom 5 ft from the nearest family member.  Somehow, it doesn't seem to be as hard to convince them.

 

If I was doing this for attention, I would have quit long ago and done something interesting.

kareng Grand Master
kareng
Posted

People use to think I was making this stuff up. 

 

If I was doing this for attention, I would have quit long ago and done something interesting.

So true!

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Marilyn R Community Regular
Marilyn R
Posted

Oh yea.  I had a friend tell me that all diseases start with unstable mental health, and I should really see a psychiatrist.  I didn't respond, still don't see a way to respond to that.  As to your original question, I couldn't tolerate soy, dairy, eggs, or most processed food additives after going gluten-free,   I can now, so that was relatively short lived.

 

I had such a strong reaction to quinoa that I'll never try it again  Fructose intolerance could be your "thing".

 

Try to pay attention to your food reactions and ignore numbskull friends/family; they probably mean well, deep, deep down.  (lol)

cahill Collaborator
cahill
Posted

Repeatedly usually by someone that had MD at the end of their name.

I once had a  doctor actually ask me if my husband and I were having problems :blink: when I had gone to him for abdominal pain .

 

My former PCP ( I fired her) actually said  to me that I needed to "just calm down" and take the drugs  ( Antidepressants and antianxiety  )   she wanted to prescribe and I would be fine. We actually got into a shouting match and she FINALLY  referred me to my current GI doc ,, I think she finally gave me the referral  just to shut me up .

My family and even my x husband ( may be one of the reasons he is my x ) constantly were telling me that it was all in my head and that I was exaggerating.

 

Now that  my niece (  + blood work and endoscopy) , both my daughters ( endoscopy ), 2 of my grandchildren(  + blood work)   and I  (  + DH biopsy and diet response )have been diagnosed with celiacs  they dont say much but most of my family   still refuse to be tested :ph34r:

Mr. GF in Indiana Newbie
Mr. GF in Indiana
Posted

A common discussion between Celiac citizens (and many other disease sufferers), and their doctors, is that the gut or cognition problem is all in their head. Doctors make notes about the apparent mental health of their patient at many visits. I suppose I have had a dozen or more doctors tell me my health issues were somewhat or largely mental (except the psychiatrists they sent me to, who immediately began looking for the physical issue..ultimately my neurologic problems were explained to me as a vitamin/celiac issue by an eye doctor!). However, a common result of most gut disease is depression, partly from being sick and frustrated, isolated, and often a reaction to ssri's. Celiac disease and its consequences (like parathyroid disease) are well known to make you crazy, as your brain and nerves are attacked, sleep is destroyed, fatigue overwhelms the person, and they can't get proper nutrition.

Incidentally, I discovered I can't handle a common ingredient of watermelon, can't remember the name, but it is used in a supplement at the health food stores/vitamin pushers. Also, if you take thyroid supplement, beware of things that interfere with it, such as Acetyl L Carnitine, which is otherwise helpful for energy to some people (it was, to me) but according to the rxlist.com it can interfere with and lower thyroid levels. So can calcium. Please consider carefully finding foods you can eat without issue, then slowly experiment repeatedly to find out what you can't handle. (bananas...how could I turn up sensitive to bananas? Damn).

dilettantesteph Collaborator
dilettantesteph
Posted

It is very hard to figure out what exactly it is that you are reacting to.  I have often blamed it on one thing only to find that it was another.  In my case, I get sick the next day so that it could be anything I ate the day before.  It can take quite awhile to get it all sorted out.  You have to be patient.  Write it all down.  It's pain, but worth it.  It helps to keep your diet really simple with unprocessed foods and try not to change more than one thing a week.  It can take a week to notice a reaction to something.  Most people not in this situation don't have any understanding for it.  It's not worth mentioning it to people who are going to tell you that you are crazy, and yes I've been told that, especially by other celiacs.  I hope that you feel better soon.

Pegleg84 Collaborator
Pegleg84
Posted

Nope, you can't think yourself into having the big D. Seriously.

On occasion I worry that some symptoms are more linked to stress than to something I ate, but it's usually a combo of the two, but if it's something "in my head", then calming down doesn't make the stomach pain go away.

The things that happen to our bodies are real, and are caused by things we put in them. Sure, you can end up with physical issues from stress and such, but with us it's more likely that the stress and anxiety were caused by something we ate in the first place!

 

Anyway, hopefully all your sudden sensitivities are temporary. Some people (not all) find that they get better as your gut heals, but you might be left with more persistent intolerances (I can't do dairy or soy, and things like eggs, brown rice, quinoa, etc bother me).

Sounds to me like you know your stuff, and are doing everything right.

Happy healing!

w8in4dave Community Regular
w8in4dave
Posted

My husband told the Dr. he thought I went running to the bathroom because of stress!! I was like "What?" What are you talking about?I am stressed because I have to run to the bathroom 10 times in an hr. not stressed and then having to go to the bathroom!! SO the next time I went to the Dr. By myself! It sure would be hard to remember to go to the bathroom 100 times a day and to say my gut is killin me all the time!! It's too much work to "fake" 

Fire Fairy Enthusiast
Fire Fairy
Posted

My husband told the Dr. he thought I went running to the bathroom because of stress!! I was like "What?" What are you talking about?I am stressed because I have to run to the bathroom 10 times in an hr. not stressed and then having to go to the bathroom!! SO the next time I went to the Dr. By myself! It sure would be hard to remember to go to the bathroom 100 times a day and to say my gut is killin me all the time!! It's too much work to "fake" 

My BFF thought my migraines were all stress! And that I was depressed. Yes great way to deal with stress and depression curling up into a ball and not moving for 13 hours. I was depressed and anytime someone said anything I was like "You try living with chronic migraine and see if you get depressed!"  

 

I have a migraine now, even gluten free I still occasionally get them. I'd say I'm averaging one a month (a few days long) now which is a lot better than pre-gluten free when it was around 33% of the year. Had a lady complaining to me at work about how much she suffers with Migraine. One year she had 4 of them!!! And one was on her Birthday!!! I was not amused. Not one bit. She was not sympathizing with me she was trying to get sympathy. Sorry but if you're lucky enough that's all you suffer I'm really not the one to whine to. Any migraine is awful but really it's like someone whining to you they had 4 days last year they had diarrhea!

 

PS my older brother can't stand for me to say, "my guts hurt". He says, "ladies don't have guts". He's not trying to be funny either.

GwenO Apprentice
GwenO
Posted

Bah.  I've had issues my whole life.  My doctor told my mom when I was little that I had "stress" issues.  My daughter was diagnosed celiac a year ago.  I tested negative.  I've gone gluten-free with her (with the odd slip).  I feel a whole lot better, but I have to be very careful.  They found that there is "visible damage" where my large and small intestine meet - they do not know why.  But it was a relief to find a doc who took me seriously, looked into it, and found something.  I work in a hospital, and I am appalled at times by the way some docs treat their patients.

MitziG Enthusiast
MitziG
Posted

Just one thought to bring to your attention, since you are only recently gluten free and probaBly still "learning the ropes".... is it possible the foods you are reacting to are cross contaminated with gluten? Watermelon gets cut on a cutting board- did you buy a new one yet? Onion rings may be made in the same fryer as other gluteny ones, etc....probably you already know this, but just wanted to make you aware in case you weren't.

Multiple sensitivities are nott uncommon in the beginning- I think our immune system must go a bit bonkers when we take gluten away. For a lot of people things calm down a bit after a few months. It does make it difficult to know you are doing the right thing though when it seems like no matter what you eat, you end up feeling awful! Hang in there, it gets easier.

lovechild Rookie
lovechild
Posted
  • Author

they think you are FAKING DIARRHEA ?  how is that even possible......

 

people are idiots.  i'm so sorry.  

 

i'm sure people thought i had some kind of eating disorder before i got diagnosed.  my mother-in-law is a (here have a cupcake and get over yourself) jerk about it still.  who cares - notme!  lolz

 

i have been handing out the 'food journal' advice today all day so:  keep a food journal and write down everything that crosses your lips - try to eat simple and 'clean' no fancy spices and ingredients.  i hate watermelon, so nobody should *ever* eat it <just kidding 

Thanks for this! That is what I thought too! How am I supposed to be faking diarrhea and big dark, sunken circles under my eyes along with all of the other symptoms that I had and some that I continue to have. Thanks also for the suggestion of using a food journal. I will have to give that a try. :)

lovechild Rookie
lovechild
Posted
  • Author

Just one thought to bring to your attention, since you are only recently gluten free and probaBly still "learning the ropes".... is it possible the foods you are reacting to are cross contaminated with gluten? Watermelon gets cut on a cutting board- did you buy a new one yet? Onion rings may be made in the same fryer as other gluteny ones, etc....probably you already know this, but just wanted to make you aware in case you weren't.

Multiple sensitivities are nott uncommon in the beginning- I think our immune system must go a bit bonkers when we take gluten away. For a lot of people things calm down a bit after a few months. It does make it difficult to know you are doing the right thing though when it seems like no matter what you eat, you end up feeling awful! Hang in there, it gets easier.

You are totally right! The watermelon was bought at the grocery store and was already cut up so it could have been cross-contaminated. I did make some onion cakes at home (being careful about cc) and they made me sick and then I also got sick again when I ate out at a gluten free/vegan restaurant and the onion rings and stew with onions in it could have also been cross contaminated, even though it was off the gluten free menu. The reason why I think why these situations are more of a fructose malabsorbtion reaction is because each time I ate the watermelon and onions I was running to the bathroom with (sorry in advance for the TMI), the explosive gas for hours, watery d, fatty stool, mega cramps where I couldn't stand up straight and for two days later I was still burping onions. They were experiences I never want to have again. Yikes! Way worse that gluten exposure where I my symptoms also come on shortly after exposure but the difference is my stomach just bloats up, I have stomach cramps, foggy head, extreme exhaustion, d followed by c for days after, headache etc.

 

Also, I think I may have a sugar problem in general because of my hypoglycemia. Lately whenever I have something with the slightest amount of sugar in it (even fruit) I get really light headed and dizzy. I am not sure what that is all about but hopefully it resolves soon.

 

I have been eating home exclusively for the past few weeks so I can avoid cc but I am still feeling crappy. I am too scared to try onions or watermelon again for fear of the very painful symptoms.

 

Thanks again for taking the time to reply and for your suggestions.

lovechild Rookie
lovechild
Posted
  • Author

Thanks everyone for your comments and suggestions. It feels great to know I am not alone and that others have been in similar situations. Also, thank you for your suggestions. I am crossing my fingers that I get all of my intolerances sorted out soon. It is hard to know what to eat anymore and I am getting bored with the same-old that I have been eating for the past little while.

 

I am seeing a MD/naturopath doctor who comes highly recommended. He is not cheap so hopefully I am on the right track with him. I did decide to get the ELISA food intolerance panel done in desperation and I should have the results in the next couple of weeks. I am interested to see what the results say.

 

We are going to Disneyland in 2.5 weeks and I am kind of worried about what I am going to eat on my gluten free, dairy free, soy free, mostly sugar free diet without being able to cook any of my own meals.

w8in4dave Community Regular
w8in4dave
Posted

I have only had a few Migraines in my life!! I wouldn't wish that on anyone!! I have always prided myself for not having headaches on a regular basis! When I went to the Doc and he asked me I told him , I have been having headaches! I NEVER have head aches!! I have always prided myself for never having head aches!! And now I am getting them!! I was kinda Glad to hear I had Celiac!! Just because there was an answer! 

I truly hate to hear of anyone suffering!! I sure hope you get your answers!! It does tick me off when my Dr. doesn't believe me!! 

IrishHeart Veteran
IrishHeart
Posted

Lovechild

 

Just to add: I think Mitzi may have meant your own cutting board at home may be a culprit if you cut up watermelon on it after using it for bread..

I can honestly say that the cut watermelon in the produce dept. has never glutened me. The produce section is not also cutting up bread

for anyone, I am sure. The machines are cleaned and it is highly unlikely gluten is involved. IMHO.

 

Disneyland is very gluten free friendly. People report wonderful experiences there. Have fun! :)

klisja Rookie
klisja
Posted

Not to my face but I think people thought I was depressed and was just using my stomach as an excuse (like kids do when they wont go to school).

 

I have, like you, serious issues with food. All I can eat is rice (and ricecakes), rolled oats (not quick), milk, cream, butter, salt, white sugar, meat (not pork), eggs and decaff. I eat cheese too but I think it's problametic. That's it for now!

 

Good luck, it took me 3 years to find my list :)

Salax Contributor
Salax
Posted

A common discussion between Celiac citizens (and many other disease sufferers), and their doctors, is that the gut or cognition problem is all in their head. Doctors make notes about the apparent mental health of their patient at many visits. I suppose I have had a dozen or more doctors tell me my health issues were somewhat or largely mental (except the psychiatrists they sent me to, who immediately began looking for the physical issue..ultimately my neurologic problems were explained to me as a vitamin/celiac issue by an eye doctor!). However, a common result of most gut disease is depression, partly from being sick and frustrated, isolated, and often a reaction to ssri's. Celiac disease and its consequences (like parathyroid disease) are well known to make you crazy, as your brain and nerves are attacked, sleep is destroyed, fatigue overwhelms the person, and they can't get proper nutrition.

 

Agreed. And to add to that my natural doc was telling me that most of our serotonin is produced in our gut. So if we have things like chronic D or chronic vomitting we lose not only good bacteria but serotonin which is a one of our mood stabilizers.

 

So it would make sense that people with unhappy guts could be sad/depressed people, but generally it's not clinical depression. It's a lack of serotonin. I found this interesting and of course I take serotonin now with about 20 other supplements because of my colitis (chronic D, yeah :wacko: ) so it does improve my moods.

IrishHeart Veteran
IrishHeart
Posted

Seratonin is indeed produced in the gut.

The reason why people with impaired guts get depressed is because it is not being produced..... AND other neurotransmitters are not functioning as they should, either. It is a cascade effect.

It is not lost, per se....it just is not being produced--as it should be--in a normally healthy, functioning GI tract.

 

My celiac-induced depression and anxiety disappeared off gluten and after healing my gut.

When I took drugs given to me for "depression and anxiety" (before DX), it just made things worse.

Insomnia, agitation, etc. so I KNEW it was not the answer. I am not a depressive personality at all and I never had anxiety in my life UNTIL I was sick from undiagnosed celiac and malabsorption

 

Here's the deal....if anyone is a celiac or a NCGI, gluten will mess with your head. Period.

Take gluten out...........be patient, heal... and you'll feel better. (for the vast majority of celiac-related mental health issues)

w8in4dave Community Regular
w8in4dave
Posted

yea the cutting board thing!! I usually try an cut stuff on a plate. But sometimes I do cut on a stone. Is a clean soap stone ok if it is cleaned between times? I have always hated plastic cutting boards. 

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      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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