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Misdiagnosed?

hazeleyez682

By hazeleyez682
in Publications & Publicity

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hazeleyez682 Apprentice
hazeleyez682
Posted

About two months ago i saw a doctor because i was having chronic dirreah and weightloss. The doctor did several tests one being the anti ttg. She called and told me that the ttg was at 3% and to try going gluten free. Since then i have gone gluten-free but i am still having chronic dirreah and have lost another 3 lbs. Yesterday i ate gluten-free cereal, gluten-free pasta and fruit and this morning had terrible dirreah. Could this be a misdiagnosis??

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Wolicki Enthusiast
Wolicki
Posted

It's possible, but more likely a secondary food intolerance. You may want to keep a food diary and elimination diet. Also take a good probiotic and enzyme, gluten free of course. It takes some detective work to figure out sometimes. Hang in there!

Brooklyn528 Apprentice
Brooklyn528
Posted

You might need some more fiber. Try a supplement like Benefiber or Metamucil. You can get the store brands which are cheaper but work the exact same way. Also, try the above suggestion. Maybe have your GI or PCP check your vitamin levels also. You might still be deficient.

Hope to help,

Brooklyn

mushroom Proficient
mushroom
Posted

Make sure you have cut out all lactose too; this was a major source of diarrhea for me.

bethlany88 Newbie
bethlany88
Posted

Aslo be sure you are really cutting out all gluten - I thought I was and wasnt. Cross contamination in products that do not list gluten as an ingredient will also keep you sick. And yes dairy is not tolerated by almost half of celiac patients.

  • 1 month later...
Odessa Newbie
Odessa
Posted

Hi - I just joined and feel somewhat relieved to have found this site, but I am still looking for a doctor in MD to test for actual Celiac disease. I have been gluten free for the most part of 6 months (after tests doctor suggested trying it)- noticed after about 3 weeks all my joint pain disappeared throughout my body! for the first time in a very long time I didn't have any joint pain. Recently, I have been reading alot about gluten intolerance etc., and have found alot of helpful food products and books about the subject.

However, yesterday I made some bread (actually tasted ok) BRM bread mix and didn't realize or think about it - that I can't eat garbanzo beans, and it had garbanzo bean flour in it! So needless to say I had a bad reaction to the flour!! So if it says gluten free - doesn't always mean that you are not allergic to other food items listed! Read the labels!

Also I am drinking grass fed cows milk - which I think is helping my dark eye circles appear less dark!!

I have been trying to eliminate corn, corn syrup etc., also from my diet as I cannot eat corn! (which cows eat) there is so much of it in everything as with gluten- it's really hard to do!

Also I read in a book that carrageenan along with other additives can act like gluten in your body! So I have been trying to read labels etc.,

Well I haven't really been misdiagnosed, but not sure what to do next -

Test I had :

Gliadin Ab, SIgA - 20 - Positive

also had other tests indicating low cortisol, zinc, vitamin D levels.

My conclusion is to eat meats (preferably grass fed) protiens, vegetables, fruit, and fish! wow just regular food! and brown rice!!! Ok so what's next - Move to the country and live on a farm! :rolleyes:

weishy Newbie
weishy
Posted

I agree with what they said about products claiming they are gluten free but may actually have gluten in them. I have found products marked as gluten free, but in a smaller print it says, 'made in a factory with wheat.' Stay away from those products. A recent article I read also stated that some products that claim they are gluten free, but do indeed contain traces of gluten in it. Unfortunately it didn't state which ones. I'd stick with products that are largely to make food for celiacs like kinnick, glutino, etc. Also there are some debate about whether or not oats is a source of gluten. i know my son can't tolerate those either, so that's a possibility.

Another thing is that before anything goes into your mouth I would make sure your hands had just been newly washed with soap and I wouldn't touch anything else. If you're eating something at a coffee shop (where gluten eaters eat), and you happen to sit in a chair where someone had a wheat croissant and rubbed their hands on the chair, that spot would potentially have gluten on it. If you rub the same areas, it's possible to get it on your own hands and ingest it if you then handle your food.

Regarding cooking in the kitchen, I wouldn't mix cooking/eating utensils together when it comes to cooking gluten...unless you're going to wash it crazy good.

Good luck!

Hi - I just joined and feel somewhat relieved to have found this site, but I am still looking for a doctor in MD to test for actual Celiac disease. I have been gluten free for the most part of 6 months (after tests doctor suggested trying it)- noticed after about 3 weeks all my joint pain disappeared throughout my body! for the first time in a very long time I didn't have any joint pain. Recently, I have been reading alot about gluten intolerance etc., and have found alot of helpful food products and books about the subject.

However, yesterday I made some bread (actually tasted ok) BRM bread mix and didn't realize or think about it - that I can't eat garbanzo beans, and it had garbanzo bean flour in it! So needless to say I had a bad reaction to the flour!! So if it says gluten free - doesn't always mean that you are not allergic to other food items listed! Read the labels!

Also I am drinking grass fed cows milk - which I think is helping my dark eye circles appear less dark!!

I have been trying to eliminate corn, corn syrup etc., also from my diet as I cannot eat corn! (which cows eat) there is so much of it in everything as with gluten- it's really hard to do!

Also I read in a book that carrageenan along with other additives can act like gluten in your body! So I have been trying to read labels etc.,

Well I haven't really been misdiagnosed, but not sure what to do next -

Test I had :

Gliadin Ab, SIgA - 20 - Positive

also had other tests indicating low cortisol, zinc, vitamin D levels.

My conclusion is to eat meats (preferably grass fed) protiens, vegetables, fruit, and fish! wow just regular food! and brown rice!!! Ok so what's next - Move to the country and live on a farm! :rolleyes:

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  • 3 weeks later...
Quasior Rookie
Quasior
Posted

I was having symptoms even though I was on a strict gluten-free diet, then I took a closer look at what I was consuming: Toothpaste/hair care products/medication - they all had gluten in them!! It's in a lot of make up too, but since I don't even use it no worries there.

It might be sneaking in from lots of different sources, so my advice is to really look hard at what is going on, the above advice about other intolerances and cross contamination is all sound too, these are the only places I can and do occasionally get glutened now. And it does take time, but my GI symptoms were gone much faster than the other issues though!

Good luck! Quasior

CeliacHusband Newbie
CeliacHusband
Posted

A couple of weeks ago my wife & I did an iReport for CNN on her 6 year journey to get a diagnosis of Celiac Disease - you might find this interesting:

Open Original Shared Link

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
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      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
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      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
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      26F!
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