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Second Opinions Please?

annonymous:)

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annonymous:) Newbie
annonymous:)
Posted

So, i am 16 and have been having "tummy problems" my whole life. Recently (within the last year, and specifically that last couple months)my symptoms have gotten progressively worse. I have been researching possibilities and celiac seems to me like the one that fits the most but i would really appreciate another opinion to convince myself i am not crazy :)

My symptoms are...

-stomach pain/discomfort/cramping (pretty much all the time especially after eating certain foods)

-bloating and gas

-occasional diarrhea/vomiting

-feeling wierdly faint (like the room is spinning)

-random occasional muscle cramps

-reflux and indegestion pretty frequently

-shortness of breath (feeling like i cant get enough air in each breath)

When i was a baby I had problems with dairy but I could still tolerate small amounts and highly saturated ones (like ice cream and pizza, small amounts of cheese etc.) about a year ago i started to gradually feel worse after eating those previously okay things and now i eat little to no dairy ever. But i am still feeling bad, I have really disliked eating because most of the time it makes me feel sick and so i started researching and after hearing about all this gluten stuff i think it might be the culprit. SO i have a doctors appointment next week and as i have heard many doctors are pretty unknowledgeable so i wanted to hear from some personal experts what they think before i talk with the doctor.

thanks

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eatmeat4good Enthusiast
eatmeat4good
Posted

You are very smart to look at the possibility of gluten.

Your list of symptoms just as you described here should cause the Dr. to think about testing you for Celiac. But if it doesn't, you can ask for a full Celiac panel after you give them the list of symptoms.

Unfortunately, it is a crap shoot if you will get a Dr. who knows about Celiac or not.

I'm glad you know that going in.

But the good news is, if they don't want to test you and you feel better being gluten free, you can go ahead and do it on your own.

It depends how bad you want the tests.

Maybe your parents can help persuade the Dr. to test you. Are they in agreement with you?

You are light years ahead of your time figuring all this out at 16. I'm very impressed! :);)

ecf Rookie
ecf
Posted

Way to be so proactive. It is definitely good to get the ball rolling with a doctor to get to the root of your tummy troubles.

A couple of ideas: if there is a center specializing in Celiac Disease at a hospital near you, get an appointment there. Those doctors will be very well versed in the disease and, given your symptoms, you shouldn't have any trouble getting a Celiac Panel through them. There are clinics in New York, Chicago, Boston, Philly, etc.

If you can't get to one of those centers, the next best thing would be to see a Gastroenterologist, who would also hopefully go through other possibilities like Crohn's Disease.

Also, I would be cautious about going gluten free without getting tested for Celiac first. If the first doctor doesn't want to test you, see find someone else who does. You've probably come across this in your research, but if you go gluten free, your endoscopy results will always come back negative for Celiac, even if you really do have the disease, because gluten is no longer damaging your intestines. It is possible to test negative for Celiac Disease but still be gluten intolerant, but it's definitely important to have accurate test results and know which you are - for peace of mind, but also to know if others in your family should be tested for Celiac.

I hope this helps - good luck with the doctor!

  • 1 month later...
MichaelJacksons#1Fan Newbie
MichaelJacksons#1Fan
Posted

So, i am 16 and have been having "tummy problems" my whole life. Recently (within the last year, and specifically that last couple months)my symptoms have gotten progressively worse. I have been researching possibilities and celiac seems to me like the one that fits the most but i would really appreciate another opinion to convince myself i am not crazy :)

My symptoms are...

-stomach pain/discomfort/cramping (pretty much all the time especially after eating certain foods)

-bloating and gas

-occasional diarrhea/vomiting

-feeling wierdly faint (like the room is spinning)

-random occasional muscle cramps

-reflux and indegestion pretty frequently

-shortness of breath (feeling like i cant get enough air in each breath)

When i was a baby I had problems with dairy but I could still tolerate small amounts and highly saturated ones (like ice cream and pizza, small amounts of cheese etc.) about a year ago i started to gradually feel worse after eating those previously okay things and now i eat little to no dairy ever. But i am still feeling bad, I have really disliked eating because most of the time it makes me feel sick and so i started researching and after hearing about all this gluten stuff i think it might be the culprit. SO i have a doctors appointment next week and as i have heard many doctors are pretty unknowledgeable so i wanted to hear from some personal experts what they think before i talk with the doctor.

thanks

Wow! Those are almost the exact same symptoms I had! :D As the disease progressed I started to get dermatitis herpitiformis. I had vertigo the spinning sensation and was diagnosed with Meniere's Disease, not a good feeling, because it tends to cause nausea sometimes. :wacko: There is a link between Meniere's Disease and Celiac. Try convincing your doctor or go on a gluten free diet and see if symptoms improve.

Hope this Helps!

MichaelJacksons#1Fan =D

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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