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18 Years old and terrified


Joff

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Joff Newbie

Hi everyone, I've had pale foul smelling stools for an extended period of time which can sometimes alternate between diarrhoea and constipation with very rarely some red/white spots in the stool along with lower abdominal pain and pain below my ribcage/lower sides which I'm terrified is to do with my lymph nodes. When I first went to my doctor he gave me some treatment for IBS and also got me in for a blood test. All my bloods came back normal apart from my liver which really freaked me out at the time and I have another blood test in a few days time. I have been gluten free for about 2 weeks, since my first blood test, and symptoms haven't stopped although gluten free food does seem to sit in my stomach easier and I have felt less fatigued upon going gluten free, though I did unknowingly eat some gluten last night and have had a very gassy stomach since. The symptoms can also be heavily exacerbated by alcohol however. I'm 18 years old having just started university in the UK and this things are getting to the point where I'm struggling to cope. My fears are also making me feel like I could have some kind of cancer or Crohn's disease and at 18 this is turning me into a complete wreck. Is it likely I have Coeliac or could it be something much worse? I'm starting to fear the worst!


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GFinDC Veteran

Hi Joff,

Welcome to the forum! :)

You could have celiac disease, or something else.  Nothing in your symptoms descriptions would rule out celiac disease.  Celiac disease can cause abnormal liver function tests.  The best thing to do is get tested for celiac disease.  But to do that you need to keep eating gluten until all testing is done.  The testing checks for antibodies to gliaden in your bloodstream.  No gluten equals decreasing antibodies in the bloodstream and an inaccurate test.  So it's just a simple blood draw for the antibody testing.  The 2nd part of testing is an endoscopy to take 4 to 6 biopsy samples of the small intestine lining.  They check those biopsy samples for damage to the villi lining of the small intestine.  You are better off to be diagnosed early so you can avoid a lot of possible future damage to your body.  We are glad to help you out with questions and advice on how to get started on the gluten-free diet.

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    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
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