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BamBam

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BamBam Community Regular

This past week I have read almost all the threads through this whole message board. It is just amazing the symptoms and problems associated with Celiac disease. I don't remember where I read some of them but I associate with so much of the depression/mood disorders. One gal mentioned that when she eats gluten, she is a "b" to work with and that she doesn't really care about her self worth and different things like that. This past week I think I got some gluten somewhere. We attended the Bucking HOrse Sale and I purchased a polish dog with no bun, but the mustard and ketchup were off brands and I really didn't realize that there is a difference in those condiments. Anyway, when I put gluten in my body I just get depressed, have no self confidence, my insides get all twisted up, my bowels are all messed up and I just don't care about anything. I get so overwhelmed with my life and problems I just do not know what to do with myself.

Under my name for this message board I am listed as "advanced member" and I think that is so untrue, because I am learning just as much as the rest of you guys.

Thank you to all of you that respond to my messages, I appreciate all of your help and understanding when I get into one of these funks.

BAMBAM


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celiac3270 Collaborator

I posted about this, today, but Open Original Shared Link

Just hang in there, in a few days you'll feel yourself again... and we're always here to help :)

marycubs Rookie

Hi -

I'm a newbie - just recently diagnosed. I agree that the depression/mood symptoms that I found others were experiencing were a surprise to me. It made me feel so much better about myself - because I have been dealing with depression/moodiness for some time. It's so much easier to know and understand that the physical problems are real and related to a physical cause...it's harder to understand the emotional issues that happen; it's hard not to blame yourself if you are feeling down. I've been gluten free (or trying to be) for 3 weeks now - and I definitely feel a difference in my mood - not all of the time - but on an average I feel more 'upbeat'. I think part of the issue for me is that I felt like I had lost control of my own body - and that's a stress on the mind. Now I feel like I know what the issue is and I am back in control; I can deal with this. :rolleyes:

skbird Contributor

Well, then you probably read my comments about three weeks ago where I was totally falling apart. I hadn't been that depressed in 10 years and was so worried that mythological "bell jar" was decending on me, I was freaked out! Turned out it was a two day emotional breakdown due to a miniscule amount of gluten. I still can't believe any of it, looking back, but I was sure I was never going to make it out of that one in one piece.

It affects my gut, my mind, my joints, my head (migraines), and my attitude. What an amazingly horrible thing gluten is. Whenever I'm in the store looking at the alternate flours and I see the package of "Vital Wheat Gluten" I have to say out loud to anyone around who might hear, "EWWW look! It's the not-so-vital wheat gluten! Yuck!"

:D

Stephanie

connole1056 Rookie

I do have to agree with celiac3270 on this one. Being an "advanced member" does not refer to anyone's knowledge , just his number of posts.

Personally, I think the labeling could be done away with as what is refers to has no inpact on what the poster has to say.

Otherwise, I hope BAMBAM is feeling much better!

Emme999 Enthusiast

For me, the depression is the biggest symptom I have when I eat gluten. The crazy thing is - I just found this out :blink: Throughout my life I have struggled with depression/anxiety but didn't think there was any real reason for it (besides going through some rough times and having some difficult memories). But when I did the "gluten challenge" before my endoscopy, I was a total wreck! I cried soooo much and couldn't deal with anything. I felt helpless and confused and alone and worthless. Because I was eating gluten at every meal, I am absolutely positive that it is what caused these emotional problems.

Now I am happy though ;) Because *now* I know what causes it (or at least intensifies it) and *now* I know how to protect myself from these emotional rollercoasters. Yay! :D

I am also proud of myself for having survived this far - before I had any control over what was happening in my mind. I think all of us who have dealt with this "symptom" and stayed alive for as long as we have before finding out what the cause was *should* be proud of ourselves. I have so much compassion for all of you who have gone through this pain.

For me it has been lifelong - I was on anti-depressants for the first time when I was 15 years old. I tried to kill myself when I was 16. I've been on Paxil, Prozac, Wellbutrin, Effexor, and Imipramine when I was young. I've done hypnosis, therapy, support groups, etc. And now I find out that it's gluten :rolleyes: Life is wild, isn't it?

Anyway - best wishes to all of you who struggle emotionally because of celiac disease. My heart is with you.

- Michelle :wub:

plantime Contributor

When I get glutened, I get so depressed, I start thinking about suicide. No medicine can stop that, I have to work through it and work harder not to get glutened again. I also am perimenopausal, and my hormone fluctuations cause severe depression. I am supposed to be on meds for that, but $73 a month with no insurance is $71 more than I can afford, so I muddle through. I find myself using comfort foods (most specifically, chocolate) to get through. I go for a "mental evaluation" on June 9. I don't think it will tell me anything that I don't already know.


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tarnalberry Community Regular

Yep, those gluten blues are ... "darn annoying", to put it lightly. I generally - during those times, and the nasty hormonal bits of the month - just try to turn off the "thinking about things" bit of my brain. Way harder done than said, I know, but I try to just focus on getting through the following few days before making much of anything of a decision.

It reminds me of... forgot their name... one of our member's frequent quotes "this too shall pass"

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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