Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

We Need To Start A Thread On Stupid Stuff Doctors Say!


mushroom

Recommended Posts

mushroom Proficient

:rolleyes: "We need to start a thread on stupid stuff doctors say! It would be hysterically funny." Skylark posted this in another thread. So I thought I would get it started.

I sleep with oxygen at night in Nevada because I start breathing really slowly and shallowly at night and my oxygen concentration in the bloodstream drastically drops and sends me into atrial fibrillation. So I get referred to the sleep unit in New Zealand when I get back, with all my U.S. records and supporting documents saying that BiPAP does not work, but that supplemental O2 does. They do their own SPO2 study, I go for consultation with the "sleep specialist", and this is what I get:

"If one puts the issue of the intermittent atrial fibrillation to one side, then currently we would not regard the provision of nocturnal oxygen as geing indicated in this case.:" And what does he recommend? The failed BiPAP. (And this, I believe, is due to a comment he made offhandedly, "We don't do that (nocturnal oxygen) here." )

So here we have a doctor putting aside the problem he was consulted for and trying to find a solution to another problem not at issue, which appears to be expelling CO2, which is the reason BiPAP doesn't work because I can't breathe out against it. and it makes me ill with crazy blood gases. Gahhhhhh. Bangs head against wall, after a night of atrial fib. and a ruined day recovering from it :rolleyes: Kill this guy :ph34r:

Liike all these cases, it is not funny, more sad than funny, but real. Sorry this one took so much explaining. Hope you hung in there :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 283
  • Created
  • Last Reply

Top Posters In This Topic

  • IrishHeart

    44

  • Bubba's Mom

    21

  • mushroom

    17

  • Marilyn R

    10

Top Posters In This Topic

  • IrishHeart

    IrishHeart 44 posts

  • Bubba's Mom

    Bubba's Mom 21 posts

  • mushroom

    mushroom 17 posts

  • Marilyn R

    Marilyn R 10 posts

Jestgar Rising Star

Doc brought food to a potluck meeting. Set down a bag of pita chips and said "these are gluten-free"...

Bubba's Mom Enthusiast

After my DX of Cliac with severe villi flattening my insomnia and anxiety started to increase..rapidly. I asked my PCP to run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I was taking a multi-vitamin and I said yes. She said "then it couldn't be a deficiency." :blink:

She also said she questions my DX because I'm too old at the age of 54 to just be getting Celiac!

I had a GI run a gene test. When he looked at the report he didn't know how to read it. He saw the alpha 1 and beta 1 with the additional alleles listed and since it didn't say DQ2 and DQ8 ONLY, he said it was negative. I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.

IrishHeart Veteran

I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.

Not to interrupt the flow here, but me too! DQ2.2 and it is supposedly considered "rare"--about 1-2% of the celiac pop.?

I am wondering where you found that info??--- because I'd love to bring it to my new (very cool) GI--who said he has never seen celiac manifest with so many devastating symptoms as I have.

He is very gracious about accepting articles from me--in fact, he encourages it.:)

Can you point me to that info source?

thanks a bunch! :)

IH

Bubba's Mom Enthusiast

Not to interrupt the flow here, but me too! DQ2.2 and it is supposedly considered "rare"--about 1-2% of the celiac pop.?

I am wondering where you found that info??--- because I'd love to bring it to my new (very cool) GI--who said he has never seen celiac manifest with so many devastating symptoms as I have.

He is very gracious about accepting articles from me--in fact, he encourages it.:)

Can you point me to that info source?

thanks a bunch! :)

IH

I needed the paper work right in front of me to compare what this article says. It lists the exact info my gene test results show.

http://en.wikipedia.org/wiki/HLA-DQ2

IrishHeart Veteran

I have so many stupid doc stories, arrogant replies that would make you wince and say "what a jerk!" but the worst ones happened before my DX. I was desperate to have some relief from the nerve/joint/bone pain-- so I saw several rheumies and neuros and a pain management doctor with the empathy of a rock. "First do no harm"? Yeah, right! A few from my collection:

(1) March 2008 The rheumy examines me, cannot explain the burning pain, stiffness or tight, weakened muscles at all and when I ask him, "Since there are no medications that are helping, only causing horrible side effects, do you think if I were to use any supplements that reduce inflammation that it would help in any way?"

He replied with a mocking laugh: "Well, sweetheart, if you throw enough sh-t against the wall, eventually something might stick."

<_< Hubs wanted to punch his lights out.

(2) June 2008 The PM doctor looks at my spine films, barks "You have the spine of a 22 year old. It's not your spine." (I actually have osteopenia and several degenerating discs--but apparently, he cannot see them? The spine/ortho guys saw them plain as day)

I ask tearfully: "Then why am I unable to walk, sit, stand or lie down, turn my neck or lift things without excruciating pain?"

He says: "You probably have that fibromyalgia, even though I do not believe it even exists". :blink:

He goes on:" I can't help you. You need to do some yoga or take stress reduction classes. Why are you crying?"

Me: "I am in pain 24/7, I cannot sleep. It hurts just to lay down... and honestly, my father just died."

Him, standing up, signaling we are done now..." Oh, well, you are just grieving. I know, I also have a background in psychology. You need to relax, take some anti-depressants and chill out. I can't help you. I shoot up necks for a living." He left the room.

<_< Hubs wanted to punch his lights out.

(3) Nov. 2009 Another rheumy with a major god-complex tells me I need to take methotrexate because he believes I have "undifferentiated spondyloarthropy" even though I do not have the markers for the disease. :blink: I am so desperate, I consider it. I do have OA, so I thought maybe he knows better. But when I question him about the potential side effects of the drug, stating first "with all due respect...."he gets red-faced and yells at me "Well, that is NOT respectful at all. Are you questioning my 35 years experience? Do you think I would risk my reputation and give you something that would harm you? Do you know who I am???"

<_< Hubs wanted to punch his lights out.

(4)Dec. 2009 A woman doctor-PCP comes highly recommended to me-- takes my health history reads it, says the first doc I mentioned is the "best" and the third is a "quack". When I mention the burning pain I have, she says I am just stressed and writes a script for an anti-depressant, tells me to "relax, girlfriend", and come back in six months.

I ask:"but what about all the symptoms I told you about--the fatigue, my hair falling out, the constant abdominal pain, shortness of breath, diarrhea/constipation"?

She snarks back: "Well I can't solve all your problems for you. C'mon, time to go. I have other patients"

<_< I wanted to punch her lights out.

(5) Jan. 2010 I see an integrative MD for 9 months. When I ask him repeatedly about my hair failing out, he laughed and said, perhaps I was “jealous and I wanted to be like hubs”—referring to his bald head!" :o

About the continuing severe pain, numbness, tingling, burning and gait/ataxia issues, brain fog I had, despite all kinds of therapeutic treatments I paid for at his clinic--acupuncture, massage,supplements? (but balked at chelation treatments)

He said I needed to do volunteer work "to get my mind off the pain." WTF? :angry:

I could not even tie my own shoes or dress myself at the time. Turns out, I had dislocated SI joints, sacroillitis, piriformis syndrome, pelvic floor dysfunction, osteopenia, hypocalcemia, pudendal nerve entrapment, small nerve fiber neuropathy and L1-L2 nerve impingement. :unsure:

and finally....regarding the IgG food antibodies testing he did while I was already gluten-free because I was trying it to see if it would help?

He insisted to hubs and me--when I asked if it would affect the results he said REPEATEDLY--

"Oh, that will not affect the results of the test whatsoever!!!"

He told me it was perfectly safe to eat gluten--as it was not a high level. Just avoid soy because I had an intolerance to that.

Give it a few months and I would be right as rain.

I did that for another 9 months, going downhill so fast I nearly died.

<_< WE both want to punch his lights out and sue him and OWN his fancy clinic.

(6) Jan. 2010 A nurse practitioner in my former GI's office barked at me "It's not gluten! You do not have celiac sprue! you can eat gluten! He went down there last year (he did an endoscopy) and you are fine. You just have GERD! and IBS and probably fibro. Take the anti-depressants. Those are good drugs for fibro and take the Citrucel, carafate, and PPIs.... and take the methotrexate, too. Everyone is trying to help you but you don't take the drugs or listen to our advice. " I threw all the scripts in the wastebasket and never went back.

Well, as it turns out, "he"--the famous GI doc I saw for 12 years and who knew about my 90 lb. decline, labeling me "anorexic"--me, who was overweight for 10 years?--- never did the biopsy when he was "down there"! <_<

<_< Hubs and I--and my new GI doctor--- want to kill him.

<_<

There are a few more:

the Neuro in 2009 who said emphatically, the burning, numbness, poor reflexes, muscle mass loss, ataxia and loss of memory were not a "neurological issue because my EMGs and Brain MRI were okay"...and I should go back to the rheumatologist" :blink:

and... my very nice Primary Care guy who was so frustrated for all those years he could not help me figure it out but kept sending me here and there--- when I told him what I DID have (3 years later) he turned pale, flipped through my encyclopedia-sized chart like it was suddenly all so very clear and illuminated by the sun and said " OMG! That's it! of course! you need to be gluten free for life!".....

The kicker? His children have celiac, but as he put it "Wow, I did not know how it manifests in adults.".... :blink: :blink:

...there are more, but I am pooped from typing so long. :P


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

My report read

DQ alpha 1 01:03, 02:01

DQ beta 1 02:02, 06

So I have the DQ A*201 and DQ B1*202 that forms DQ2.2

Quotes from the article without the extra double-talk follows...

DQB1*0202This allele is linked to several DQA1* alleles, the linkage with DQA1*0201 forms the DQ2.2 haplotype

DQ2.2DQ2.2 is shorthand for the DQ α2β2 heterodimeric isoform. The isoform is encoded almost exclusively by the DQA1*0201:DQB1*0202 haplotype. The haplotype is linked to DR7. A small percentage of coeliac disease are associated with this haplotype, and some disease causing gliadins are presented by DQ2.2.

25% of celiacs are DQ2 homozygotes (HLA DQB1*02 homozygotes), only a small percent of these do not bear DQ2.5cis.[3] This minority are invariably DQA1*0201:DQB1*0202 (DQ2.2cis homozygotes).

Isoform pairings in DQ2.5/DQ2.2 results in two functionally unique isoform. The majority of DQ2 homozygotes are homozygotes of the DQ2.5 haplotype or DQ2.5 and DQ2.2 haplotypes. These DQ2 homozygotes tend to show increased mucosa damage and degradation and are at greatest risk for severe complications of coeliac disease, refractory disease, and enteritis associated T-cell lymphoma (EATL). Further information: DQ2.5, DQ2.2, DQ2 and coeliac disease, HLA DR3-DQ2

IrishHeart Veteran

Okay, thanks. I have read this info already myself. I thought you had something else I could give him.

Let's not hijack this thread and go off topic too much :); we can pursue this on another thread or in a PM maybe? ;) okay?

IH

Jestgar Rising Star

Fun related thread: top 5

Skylark Collaborator

This is so funny! I'm glad you started it, Shroomie.

I asked my pretty good PCP about whether there are ways to lessen autoimmunity. He said "well the only thing I know of is to lower your stress level".

Gee, doc I wouldn't be STRESSED OUT if you could fix my dizziness, brain fog, and cognitive problems and refrain from pushing useless antidepressants. :blink:

researchmomma Contributor

Our pediatric GI (the Celiac expert in our city) looked at my short, puberty delayed and skinny daughter and said "I can't get my head around all of her symptoms. Her blood work is negative so let's not waste time with a biopsy, let's just see if she has the genes. If no genes, it is not possible to have Celiac". I asked her about the negative IgA testing because her IgA is low and she said since it isn't deficient, the test is fine and negative.

Then she said, "Since she doesn't have Celiac, mostly likely, let's give her high dose prilosec for one year. This will tell me if I am on the right track". What track? The I don't know what to tell you if you aren't Celiac tract?

I get to go back this Thursday and see what she says about me not giving my daughter prilosec and taking her off gluten with great success. That wil be good. Oh and I will give her the high fecal fat report which proves that she is not absorbing nutrients just like the endocrinologist and I thought.

I am amazed that a Celiac specialist would actually say with complete conviction: if no genes, you cannot possibly have Celiac. Dr. Fasano even states that it is possible. Sheesh.

I am dreading that visit.

researchmomma Contributor

IH, I think you take the cake (gluten-free of course) on this one. I am appalled at the ignorance and the lack of care.

elizabethh Newbie

I have a good one! Just a little over a month ago I was at the doctor's office for the stomach flu, and he asked me about the celiac disease after seeing it on my chart so I just briefly explained to him what happens with that, then he says:

Doctor: "Wow you need to get that checked out, you have that really bad and you need to find out what's going on."

Me: "What do you mean?"

Doctor: "You have a severe case of it, other people do not have it as badly as you do."

Me(getting nervous and confused): "What exactly do you mean? I have it worse?"

Doctor: "Well when people have celiac disease they can't eat gluten while they're sick, but once their intestines heal then they can eat gluten again."

WHAAAAT?!

Totally never thought I would look at a DOCTOR, feeling like they are totally stupid. I spent like 15 minutes explaining to him how it really is and being in total shock that anyone could think/say that, much less a doctor! Omg!

MitziG Enthusiast

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.

Kjas Newbie

My favourite one:

After me convincing my old doctor to spring me out of hospital as long as he took full responsibility for my care the conversion goes like this:

Doc: When they sent me the note they said you needed to get a psych test to see if you have an eating disorder.

Me: What the hell?

Doc: Apparently you refused to eat a lot of the food while you were there.

Me: Yeah cause I was throwing up and had D constantly, I would just throw up more food, what is the point? Plus she wants me to eat toast, and that's what started this thing when I first got admitted to the hospital. I told the nurse it makes me sick and she threatened me saying if I didn't eat, they'd make me do a psych test.

Doc: Toast makes you sick? Why don't you eat wheatbix or crumpets instead?

Me: Because they make me sick too?

Doc: Well I don't know what's wrong with you but in the meantime I'm going to run some autoimmune tests because one of your tests came back with the Ttg through the roof. In the meantime, take these steroids so you system will stop attacking itself and you have to get a psych test.

Me: Okay, so what do I eat in the meantime?

Doc: Pasta, cake, cookies, muffins, whatever will keep the weight on.

Me: That couldn't be causing the problems could it? When I was a kid I never ate anything like that stuff and I never had these problems.

Doc: Don't be silly, food can't make you sick. You probably just have an eating disorder and need an excuse to throw it up.

Me: I think I would know if I had one, I work with ED patients all the time at work. Besides how am I supposed to fake the Ttg or whatever it is?

Doc: You're probably in denial, just do the psych test.

researchmomma Contributor

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.

This made me laugh out loud.

Di2011 Enthusiast

So did you do the psych test? I would have been tempted to experiment with a psychologist over this.

researchmomma Contributor

My favourite one:

After me convincing my old doctor to spring me out of hospital as long as he took full responsibility for my care the conversion goes like this:

Doc: When they sent me the note they said you needed to get a psych test to see if you have an eating disorder.

Me: What the hell?

Doc: Apparently you refused to eat a lot of the food while you were there.

Me: Yeah cause I was throwing up and had D constantly, I would just throw up more food, what is the point? Plus she wants me to eat toast, and that's what started this thing when I first got admitted to the hospital. I told the nurse it makes me sick and she threatened me saying if I didn't eat, they'd make me do a psych test.

Doc: Toast makes you sick? Why don't you eat wheatbix or crumpets instead?

Me: Because they make me sick too?

Doc: Well I don't know what's wrong with you but in the meantime I'm going to run some autoimmune tests because one of your tests came back with the Ttg through the roof. In the meantime, take these steroids so you system will stop attacking itself and you have to get a psych test.

Me: Okay, so what do I eat in the meantime?

Doc: Pasta, cake, cookies, muffins, whatever will keep the weight on.

Me: That couldn't be causing the problems could it? When I was a kid I never ate anything like that stuff and I never had these problems.

Doc: Don't be silly, food can't make you sick. You probably just have an eating disorder and need an excuse to throw it up.

Me: I think I would know if I had one, I work with ED patients all the time at work. Besides how am I supposed to fake the Ttg or whatever it is?

Doc: You're probably in denial, just do the psych test.

My family is in bed and I am up reading stuff on the computer WITH a glass of red wine because it is Saturday night. So, I just have to say that this is another Abbot and Costello conversation. Just insanity. A book could be written about the absolute absurdity of it all.

Kjas Newbie

diandliam,

I am a psychologist which is what made that statement so ironic. I would know if I had an eating disorder because I work with these girls and the occasional boy everyday because they have eating disorders. The test came up with that I do not have an eating disorder along in the past I have had periods of disordered eating, mainly due to the celiac.

IrishHeart Veteran

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.

wow, Mitzi..... doc says you're "good to go" then! Have a donut.

:rolleyes:

OY

upwitht21 Rookie

Dr insists I'm severely depressed and needed an antidepressant......just found out I'm pregnant, so anyone think my fatigue is depression related lol!

IrishHeart Veteran

Dr insists I'm severely depressed and needed an antidepressant......just found out I'm pregnant, so anyone think my fatigue is depression related lol!

congrats! and nope! best wishes!

Adalaide Mentor

Oh gosh, I'm getting paranoid. My next appointment is tomorrow! So far though in three years this doc hasn't said anything monumentally stupid to me.

On the other hand, plenty of doctors have. The most memorable was an ortho. I fell at work straight onto my knees, on a concrete floor. (I didn't drop the pizzas and they were fine to go out to the customers!) After about a month of physical therapy, drugs and a half dozen visits to the doctor I got referred to an ortho. He told me to continue with PT even though it was agonizingly painful. After another month or so when I went back and told him it's worse instead of better he told me that I was just being "too sensitive" and to learn to get over it since my MRI didn't show any real damage. I do no know how I got out of there without decking the guy.

I promptly requested a new doctor. The new doctor reviewed all my records, scheduled surgery and in no time my knee felt about as good as the rest of me. He said there was some minor damage with some "junk" floating around in my joint which is why it always felt like I had shards of glass whenever I moved my leg.

Too sensitive my fat a...... I still want to punch that guy.

The only other doctor who really made me angry was one who told me in the ER on a evening when my gallbladder decided to act up that I should stop coming into the ER for pain relief and just have surgery already. "The ER isn't a drug dispensary." This is after I explained that I was having trouble with my insurance paying for the surgery and had no other options. I was also already high as a kite from percocet when I went in and was still in so much pain I was lucky I could walk.

IrishHeart Veteran

So far though in three years this doc hasn't said anything monumentally stupid to me.

YET :lol:

(sorry, I am a tad "jaded"-- to say the least)

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.