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Biopsy Results Tomorrow

mmm1017

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mmm1017 Rookie
mmm1017
Posted

I had my bloodwork and my biopsy last Friday. I know that some GI doctors do the bloodwork first, but mine was pretty certain from my medical history that I was either celiac or gluten intolerant. While she was doing the EGD, she took pictures of the duodenal bulb (with a cracked-earth appearance) and the the duodenum (scalloping). She said it looked like celiac to her but we would wait for the biopsy results. She was also concerned about food residue in the gastric body, fundus, and antrum; so, she did a biopsy there too. I'm supposed to call tomorrow for the results. If the genetic test also comes back positive, my children have to have that done as well. Our allergy doctor is concerned that my 8 year old is already showing signs of celiac and my baby is not gaining weight the way she should. Hopefully, no matter what, my kids can avoid all of this. What are the chances that the appearance of the duodenum is from something else?

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mushroom Proficient
mushroom
Posted

Possible, probably not probable, is my best guess.

mmm1017 Rookie
mmm1017
Posted
  • Author

Possible, probably not probable, is my best guess.

On the one hand, I hope it is negative for my children's sake. On the other hand, it would explain my medical history. Milk allergy (from infancy), IBS (diagnosed as a teen), migraines (since childhood), fibromyalgia (diagnosed 3 years ago), hypothyroid, and on and on. It would be wonderful for it all to go away by simply changing my diet. Well, maybe not "simply", but you catch my drift. An end to the pain and fatigue...

mmm1017 Rookie
mmm1017
Posted
  • Author

On the one hand, I hope it is negative for my children's sake. On the other hand, it would explain my medical history. Milk allergy (from infancy), IBS (diagnosed as a teen), migraines (since childhood), fibromyalgia (diagnosed 3 years ago), hypothyroid, and on and on. It would be wonderful for it all to go away by simply changing my diet. Well, maybe not "simply", but you catch my drift. An end to the pain and fatigue...

And they were all positive for celiac. What now?

mushroom Proficient
mushroom
Posted

And they were all positive for celiac. What now?

Welcome to the club - you will have to learn the secret handshake :rolleyes:

The next step is to have your kids tested for celiac too, I would think, since it is so genetically based. Also the genetic testing because they may not test positive for celiac right now so that would show the potential.

You must stop eating gluten now, of course, but the results of the children's testing and a family meeting will be necessary to decide how gluten free your house is going to be, whether your husband would be onboard with not eating gluten at home, etc.,etc.

Fire away with any specific questions you have.

Twinklestars Contributor
Twinklestars
Posted

I'm glad you have answers for your ongoing medical problems. Gluten free straight away for you, but your kids will need to stay on gluten until they're finished with their testing. I think it's important to get them tested, so you know for sure whether they're celiac. I would imagine a positive diagnosis would make it easier to explain to their school, etc. Good luck :)

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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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