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Do Doctors Really Know Best?


SadiesMomma

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SadiesMomma Apprentice

I am FINALLY on the roll of getting things taken care of for me physically, mentally, all togehter Im trying to make a better life for me, my honey, and my little girl.

I finally gor my family physician (whos a whole crock of s$#&e if you ask me) to refer me to a specialist! Its only taken me YEARS to get her to do so.... Uuuugh, This damn disease is sooo annoying. Obviously IM not getting better so let me see someone who knows what he heck theyre doing. Do you guys ever feel like that?

Anyway, I went to see the gastro doc day before yesterday. He gave me some pamphlets on Celiac and we talked a little about it. Nothing really that I didnt already know. He wants to do a colonoscopy (eventhough ive been on a gluten-free diet for over a year), and he also wants to do an upper Gi endoscopy. Any of you had these both done? What are they like? Scarey? Did the phosphasoda make you sick????

Im am soooo scared of the procedures, as well as the possible news I can find out. I want to hear something thats not horrible.... not like colon cancer, stomach cancer or something. My mom and brother both have stomach cancer. Is that possibly hereditary, I mean like my odds, are they higher because they both have it?

I am sooo confused with all of this. I NEED A HUG!!!! I just need to hear that Im not in this alone!!!!

Thanks for listening to me rant and nag.


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Lily Rookie

Heather,

I've had both procedures done and they are painless. The medicine they gave me to put me under put me out like a light and I have no memory of it. I came home and had the best nap I've had in years :). I have to have a follow up biopsy in 6-8 months to see if my villi are growing back. I had a barely noticeable sore throat the next day but those were the only side effects I noticed.

I wanted to have everything looked at so I could know where I stand. I too was/am scared of cancer and glad they were looking around. Better to know what you're dealing with than to wonder what it could be, don't you think?

Here's a big hug :).

Lily

Dwight Senne Rookie

Hi Heather,

Ditto to everything Lily said!

I had both "scopies" done at the same time. Piece of cake. Don't remember a thing. Zero problems afterwards.

Generally speaking an Upper GI and an Endoscopy are two different tests. The Upper GI test involves drinking a barium solution while having xrays taken. The Endoscopy, of course, is the camera down the throat to examine the stomach and small intestine. I have also had the Upper GI test and other than the somewhat yucky tasting barium, it wasn't bad at all.

I completely understand about your anxiety over these procedures. I felt the same way. But now that I have had them, I realize my anxiety was baseless. I would consent to have any of them done again in a heartbeat. And this time I wouldn't worry a bit! So here's two hugs for you! :):)

On a darker note, I'm no doctor, but yes, I do think you are at a higher risk for cancer because of the family history. Sorry :( And no, disowning them won't help!

You probably realize that it is doubtful that your doctor will be able to make a Celiac diagnosis from these procedures since you have been gluten-free for a year. I imagine he just wants to rule out other problems. Also, since I'm being a nit picker anyway, it is the Endoscopy that is used to diagnose Celiac, not the Colonoscopy.

Good luck!

kyss Rookie

Heather,

I am new to this board and I too have an endoscopy scheduled soon. I am also nervous, but my mother who had both endo and colonoscopy at the same time said it wasn't bad. I am going to do the test first so I know what to expect for my girls (11 & 7) if they have to have one done too. I hope everything goes well with your tests.

Here are some hugs too from me and mine. :):):):)

Kelly

SadiesMomma Apprentice

Good luck to us all! :D

angel-jd1 Community Regular

Best Wishes to you all!!

The worst part of the scopes is the prep. I had to drink some nasty liquid!! BLEH!! It was very gross!! I did wake up during my scope. I layed there and watched it on tv. :blink: I didn't feel a thing though!! If I can say that I woke up during the procedue and STILL say the worst part is the prep...don't worry!! Everything will be fine. Just think of it as a step in the right direction twards a healthy life.

-Jessica :rolleyes:

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    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
    • knitty kitty
      Oh, my dear!  Get off that Fairlife chocolate protein shake!  That's got milk in it!  Egads! Some people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  If the villi grow back, they can resume making lactase again.   I react to casein and lactose both.  I get sores in my mouth and coated tongue, and inflammation, my Dermatitis Herpetiformis flares up, I get cold sores or shingles, and TMJ pain, well, joint pain in general, and my brain health is really affected, depression and anxiety.  So dairy is a really scary horror movie.     I take Benfotiamine and Thiamine TTFD  (tetrahydrofurfuryl disulfide).  These have anti-viral properties.   I've had chicken pox/shingles, and I also harbor the cold sore herpes virus which traveled to one eye through a nerve. It's broken now.  I had really bad nerve pain in my check at the time, then it turned into Bell's Palsy.  Thiamine TTFD helped clear up the dysphagia I was also experiencing then.  I took lots of Lysine to fight the herpes viruses as well.  Between the Thiamine TTFD and the Lysine, and avoiding dairy, mine stays dormant for the most part.   I also take a B Complex, and Magnesium Threonate to help the Thiamine TTFD work, Vitamin C, Vitamins A and D, and Zinc supplements to help Thiamine TTFD fight off those viruses. I have Sjogren's so I understand dry eye and mouth.  I found including Omega Threes, healthy fats, improved my problem.  You know how oil floats on top of water?  That's going on in our body, too.  Flaxseed oil supplements, and flaxseed oil to use on food is one way I increased my Omega Threes.  Choline and sunflower seed oil supplements are other choices I've tried.  Eat real food!  Eat fresh vegetables and fruit!  I had cooked stew in a crockpot until super mushy so I could chew and swallow it without lots of pain.  I got a bag of mandarin oranges, Cuties, whatever they're called now.  They're not too acidic.  Gluten free crackers don't have any nutritional value, no vitamins.   I followed the low histamine version of the Autoimmune Protocol Diet.  The book The Paleo Approach by Dr. Sarah Ballantyne has been most helpful.  She's a Celiac herself, and the diet has been shown to improve intestinal health. I have seen liquid vitamins on line.  Thiamine TTFD comes in a capsule, but tastes really strongly of garlic, so be prepared if your Gatorade tastes funny.   
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