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Want Formal Diagnosis

SaraKOB

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SaraKOB Newbie
SaraKOB
Posted

Hi All,

I'm so glad to be here. I've now been gluten free for 9 months and have never felt better. But I want a real diagnosis. Before I brave yet another pointless, expensive Dr. appointment I want to be ready. CAN SOMEONE HELP ME THROUGH THIS?

I'm sure my story is similar to many others. I've been battling with almost all symptons of celiac for over 7 years. I've been to several doctors with IBS diagnosis and others. I also realized later that the blood tests did not include the entire celiac panel needed and was done while I was on a gluten free diet - so the result was normal.

I live in NYC and I'm going to a referred GI doctor and telling him the tests I want. Before going, I'm planning on eating gluten again for 3 months so I can get an accurate diagnosis. However, I read that since I've been gluten free it still could be a false negative.

Anyone have any advice???

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Takala Enthusiast
Takala
Posted

You didn't articulate the reason you thought you needed the official diagnosis.

SaraKOB Newbie
SaraKOB
Posted
  • Author
You didn't articulate the reason you thought you needed the official diagnosis.

I want to know if it's gluten intolerance or if it's actual celiac disease. I think it's important for when I have my own kids or for my family who are suffering from stomach issues. I've tried for a long time to be okay with going gluten free just because it makes me feel better, but if a serious, hereditary disease is behind it, I'd really like to know.

Gemini Experienced
Gemini
Posted
I want to know if it's gluten intolerance or if it's actual celiac disease. I think it's important for when I have my own kids or for my family who are suffering from stomach issues. I've tried for a long time to be okay with going gluten free just because it makes me feel better, but if a serious, hereditary disease is behind it, I'd really like to know.

You could always have the gene testing done on yourself to see if you carry the main Celiac gene. It will not tell you if you have Celiac but if you carry the gene, you will have the genetic pre-disposition for it. Add to that your symptoms and dietary response and that's as good a diagnosis as what the medical profession currently offers.....probably better. Your children, or future children, could also be tested if you turn up positive for it. This is probably where the medical profession should actually start their diagnosis but, as they don't make any money off of the blood work, they tend to never order the test. You do not need to be eating gluten for the genetic testing to be accurate.

SaraKOB Newbie
SaraKOB
Posted
  • Author
You could always have the gene testing done on yourself to see if you carry the main Celiac gene. It will not tell you if you have Celiac but if you carry the gene, you will have the genetic pre-disposition for it. Add to that your symptoms and dietary response and that's as good a diagnosis as what the medical profession currently offers.....probably better. Your children, or future children, could also be tested if you turn up positive for it. This is probably where the medical profession should actually start their diagnosis but, as they don't make any money off of the blood work, they tend to never order the test. You do not need to be eating gluten for the genetic testing to be accurate.

Thank you! That is very helpful. Wish me luck with actually getting a GI doctor to do this on Thursday. :) I'm so jaded with doctors by now. But I think that is a very good idea. I'll let you know how it goes.

ravenwoodglass Mentor
ravenwoodglass
Posted

You need to keep in mind also that most doctors only test for DQ2 and 8 in the US. There are other genes that are considered to be related to developing celiac in other countries. There is still a chance of a false negative even with a 3 month challenge but your bodies response to it may allow your doctors to still recognize that you are 'celiac'. Do keep a record of your symtoms including all systems, gut brain joints muscles etc. and let your doctor know if the symptoms get severe.

tom Contributor
tom
Posted
. ... However, I read that since I've been gluten free it still could be a false negative.

One big part of the problem w/ celiac disease is that even a celiac who's NEVER been gluten-free has a good chance of a false negative on the blood tests.

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    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
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      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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      Fiber Supplement

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