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Celiac diagnosis with numeric data and timeline for 28 year old male

l394l

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l394l Newbie
l394l
Posted

2001 (12 years old) – First prescribed Omperezole for acid reflux.  Would go to nurses office during school because of nerves/ nausea

10/2012- Upper endoscopy- All looks good

05/2013- Experience severe lower left quadrant pain, constipation for first time.  Happened during boot camp—extreme stress, chronic dehydration, physical exertion.

10/2013- Colonoscopy, no biopsies taken, diverticula seen, otherwise all looks good.  Diagnosed with IBS

**Deal with intermittent constipation, diarrhea, abdominal pain for years**

01/2016- Go to Primary Dr. because I feel waves of fatigue/ sleepiness/ facial flushing/ foggy head/ memory issues at work. Still same old same old abdominal issues

            -Testosterone Free plus total blood test 248.2 (Ref range 249-836)

            -25 OH Vitamin D 19.3 ng/ml (Ref range 32-100)

06/11/16- Hospitalized for migraine—numbness in jaw, left arm, loss of vision, confusion, vomiting.

11/22/16- Go to new Gastro Doctor

            -Damidated Gliadin Abs, IgA 53H (Ref range 0-19)

            -Saccharomyces cerevisiae, IgA 42.5H (Ref range 0-24.9)

            -Saccharomyces cerevisiae, IgG 43.1H (Ref range 0-24.9)

            -Deamidated Gliadin Abs, IgG 3 (Ref range 0-19)

            -Immunoglobin A, Qn, Serum 278 (Ref range 90-386)

            -t-Tranglutaminase (tTg) IgA <2 (Ref range 0-3)

            -t-Transglutaminase (tTG) IgG <2 (Ref range 0-5)

01/26/17- Upper and lower scope/ further bloodwork

            -Gastritis, duodenitis, small internal hemorrhoids

            -Deodenal Biopsy- mildly increased intraepithelial lymphocytes

            -DQ2- Positive

            -DQ8-Negative

03/01/17 GLUTEN FREE DIET

Current symptoms: General feeling of unwellness, anxiety, nausea, diarrhea, weight loss, irritability, lack of motivation, loss of interest in pretty much everything.

My gut has always been tied to my nerves (i.e. adrenaline dump makes me vomit, job interview means diarrhea before, cheating girlfriend makes me physically sick and vomit).  I really think the current gastro symptoms persisting despite being gluten free are due to an undiagnosed anxiety issue.  I have a really stressful job and I believe the celiac diagnosis and new stressors associated with it have put my anxiety in overdrive.  Having to carefully plan meals or explain to others my new choice of diet has put me over the edge.  I am a pretty private person…and now having to speak openly with servers at restaurants about my disease or explaining to coworkers when asked about my new diet.  These new stressors have brought an underlying anxiety issue to the surface.  It has gotten bad to the point where I have to leave work because my upper stomach cramping is so bad…I can’t eat in the morning because I am so nauseous.  I wake up in the middle of the night to do diarrhea. 

I know i haven't really presented any questions that need answering...at this point, I'm just hoping to connect with someone with similar issues.  I also hoped it would be helpful to provide some numeric data of my own...many of the postings list extensive subjective symptoms without the actual test results...So I hope thats helpful.

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Ennis-TX Grand Master
Ennis-TX
Posted

Yeah its like a fight or flight thing with stress, if I get stressed with a full stomach I vomit. I can tell when this is the trigger cause I just nerves get real antsy, I start pacing, then just start burping stuff up no pain, no extreme urge, just blurp and there it goes a few mouth fulls normally then done.   

PS do not eat out, eat at home and take your own meal prep boxes to work, and when invited out to eat. Play it safe, and just tell them "I have some major food allergies, just playing it safe".

Been dealing with constipation since I was a kid, they had no idea what was causing til my stuff go so bad and so many other systematic issues I thought I was dieing and running a bucket list.

Thoughts on dealing with stress, look up Liquid Health Stress & Energy and Liquid Health Neurological Support. Take 1 tbsp each 2-3 times a day before meals....works wonders as part of this disease and having damaged insides is you do not absorb the right vitamins like your b vitamins and this leads to stress, anxiety, and depression issues.   Also look at magnesium, if your dealing with constipation Natural Vitality Calm is great start off with a small dose of 1/2 tsp 1-3 times a day. Over a few weeks you can slowly step it up til you find your sweet spot where you feel great and have easy bowl movements. IF you have extremely bad reactions to the magnesium citrate in the Calm try Doctors best which is a glycinate and easier on the stomach.    You can find all of these on Luckyvitamin.com or amazon. price check and order how it works best for you.

Few helpful links

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

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      High TTG-IgG and Normal TTG-IgA

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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