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louiesgirl2

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louiesgirl2 Rookie
louiesgirl2
Posted

I have not been diagnosed as of yet. I do have many of the symptoms. I had gastric bypass surgery in 1999. Lack of B-12 is a side effect of this surgery. From what I read that can be one of the causes of this disease. I have also ready any gastric surgery can cause this.

I was diagnosed with fibromyalgia in 12/2004 5 years after my surgery. Many of the symptoms are the same. However, my thereapist who I have been seeing to help with the depression diagnosed me with fibro and also suggested because I am having other symptoms to get tested for Celiac.

Called my primary doctor, he is on vacation, however his nurse said I need to see a gastro guy. My gasto guy is on vacation. Sheesh. Funny thing is I had a colonoscpy in April and it came back negative. However, he wasn't looking for this so he did not take a biopsy. I can tell you right now I am not doing that again for a long time.

Hence, I have put myself on a gluten free diet as of today. Went shopping last night and got a few things. When my gastro guy comes back, and I talk to him, and he insists on testing, I will consider it. By then it will be 2 weeks on this diet and I should know by how I feel if it is celiac disease or not.

So, that is a little about me. Any information would be helpful. Thanks for listening.

Phyliss

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lovegrov Collaborator
lovegrov
Posted

You can't diagnose celaic with a colonoscopy. You need an endoscopy for that.

Your doctor might want to do celiac blood tests first. It's unusual to jump straight to the biopsy. For all tests you should be eating gluten if you want an accurate test.

Finally, of you do have celiac disease, two weeks on the diet might or might not make you feel better. I didn't. It depends on the person.

richard

julie5914 Contributor
julie5914
Posted

Please stay on gluten until you are tested! I don't want you to have to deal with false results. Even a week or two gluten-free will skew your results if the gastro wants to do blood tests and perhaps endoscopy. Colonoscopy cannot be used to test for celiac - endoscopy can. Colonoscopy can just rule out other things like Chronn's.

KaitiUSA Enthusiast
KaitiUSA
Posted

Yep the previous posters are correct. A colonoscopy will not detect celiac. You may want to find a GI doctor who is familiar with celiac. You need to stay on gluten until after testing as well.

Before the endoscopy, usually doctors do a complete panel of blood tests for celiac. Depending how the results come out is usually when they decide if a biopsy is necessary.

Carriefaith Enthusiast
Carriefaith
Posted

Being on the diet 2 weeks prior to testing may give you false negative celiac test results. If you physically can, I would stay off the diet until you have talked to your doctor(s).

The small intestine is biopsied in order to determine if you have villi damage. This is almost always done by endoscopy (down the throat) since the upper part of the small intestine is usually the most damaged part. You can access the small intestine through a colonoscopy; however, taking biopsies from the end part of the small intestine would not be as accurate (if accurate at all) as the first part of the intestine (done by endoscopy). I have had both an endoscopy and a colonoscopy and believe me the endoscopy is WAY better and hardly painful at all. The colonoscopy well... that's another story :lol:

egardner Newbie
egardner
Posted

I am not sure what your symptoms were beyond fibromyalgia and depression, but if you had chronic diarrhea, keep in mind that with a gastric bypass you can experience "dumping syndrome" easily as a side effect. That is when nothing is absorbed and rapidly after you eat you have diarrhea, stomach cramps, etc., which would cause fatigue, joint pains, B12 absorbtion issues, etc. By its very nature diarrhea causes several nasty side effects, those included, because it eliminates vitamins and minerals before they can be used and stored properly, which leads to the other problems. You may have already known this, I just thought I would impart my small amount of knowledge just in case it is not celiac disease. Hope that helps!

DOCKLEARFAN Apprentice
DOCKLEARFAN
Posted

This might be a little bit off topic but I feel its soooooo important.

Always remember...

EVERYTHING that comes in contact with your mouth can trigger symptoms. You need to be careful about Shampoos, Soaps, Make up etc. (Not just food)

Alot of newly diagnosed people ignore the things I just stated...(Including ME lol!)

I wish you the best!

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  • 2 years later...
pantherdreamin Newbie
pantherdreamin
Posted
I have not been diagnosed as of yet. I do have many of the symptoms. I had gastric bypass surgery in 1999. Lack of B-12 is a side effect of this surgery. From what I read that can be one of the causes of this disease. I have also ready any gastric surgery can cause this.

I was diagnosed with fibromyalgia in 12/2004 5 years after my surgery. Many of the symptoms are the same. However, my thereapist who I have been seeing to help with the depression diagnosed me with fibro and also suggested because I am having other symptoms to get tested for Celiac.

Called my primary doctor, he is on vacation, however his nurse said I need to see a gastro guy. My gasto guy is on vacation. Sheesh. Funny thing is I had a colonoscpy in April and it came back negative. However, he wasn't looking for this so he did not take a biopsy. I can tell you right now I am not doing that again for a long time.

Hence, I have put myself on a gluten free diet as of today. Went shopping last night and got a few things. When my gastro guy comes back, and I talk to him, and he insists on testing, I will consider it. By then it will be 2 weeks on this diet and I should know by how I feel if it is celiac disease or not.

So, that is a little about me. Any information would be helpful. Thanks for listening.

Phyliss

Have your doc test you for vitamin D. I had "fibro" after my gastric bypass. On one of my yearly labs for the gastric bypass, my vitamin D level was very very low, as was my calcium. When I got put on major supplements and got the Vit D level under some kind of control, the fibro symptoms disappear. Its worth a shot.

Of course what I am finding out is that celiac make the malabsorption worse on top of the gastric bypass. I am new to this forum. I have been looking into this for the past week because of a comment from my regular doc about cutting out wheat. I had my endocrinologist test for this becasue I realized that my whole family has it. My mom, my sister and her family and my brother and his family are all gluten and dairy free. I have been surviving with I think is probably celiac for a long time, but more recently I have had a lot of stress physically and emotionally, amplifying the effects of my eating habits. I gained 20 lbs in three months and I am noticing that I am feeling pretty crappy pretty much every day.

I am hoping to get a result in the next day or two. But I am thinking that instead of waiting for the result, I should probably go ahead and make changes. I know in my heart that this could make a huge change in how I feel about my life.

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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