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Not Diagnosed Yet

strum

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strum Rookie
strum
Posted

So, here's my story. For about the last year, I have been experiencing increasing GI issues. Bloating, gas and diarrhea mainly. To the point that it is beginning to interfere with work, and I do not want to go out or travel. I have had gastric bypass so I had been blaming that. I noticed when I cut back on carbs the symptoms improved. For the last 2-3 months I have been eating a low carb diet. I finally had an endoscopy and colonoscopy last week and it came back as "may represent an early manifestation of Celiac's disease". Other symptoms I have included migraines, really low ferritin levels for at least six months (been either 4 or 6), been losing teeth to cracking. I also have two other autoimmune diseases - hashimotos thyroiditis and Addison's disease.

Sorry that was so long. Any way, the doctor reading the test results recommended further blood testing. So I am trying to increase my gluten intake. Does that sounds reasonable? I just started yesterday and I am so sick already, can't hardly get out of the bathroom and my belly is aching like crazy. Just wanted to see what you all thought. And to vent a bit. Thanks.

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notme Experienced
notme
Posted

sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?  

strum Rookie
strum
Posted
  • Author

Yes. The biopsy came back positive for increase in intraepithelial lymphocytes.

quote name="notme!" post="922124" timestamp="1404179706"]sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?

beebs Enthusiast
beebs
Posted

Yes. The biopsy came back positive for increase in intraepithelial lymphocytes.

quote name="notme!" post="922124" timestamp="1404179706"]sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?

strum Rookie
strum
Posted
  • Author

The report from the pathologist went on to say "may represent an early manifestation of celiac disease" and recommends further serological testing.

NatureChick Rookie
NatureChick
Posted

The two figures I've seen to ensure test accuracy (two different sources) are the equivalent of two pieces of bread a day for 6-8 weeks, or the equivalent of one piece of bread a day for 12 weeks.

In either case, it seems as if you've already realized that you have a problem with gluten. Congratulations on discovering a possible culprit for many of your woes. And best of luck getting through the next several weeks.

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    • PixieSticks
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      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
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