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kpyoung24

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kpyoung24 Rookie
kpyoung24
Posted

hey everyone! here's my dilemma... about 4 years ago i saw a gi doc after years of gi problems and months of trips to the hospital for SEVERE vomiting and d, i was very low in potassium, they got my levels up with an iv and sent me home. the gi did an egd and colonoscopy... i was diagnosed with IBS and duodenitis(which is another word for damaged villi according to my daughters gi), anyway my new doc tested me for celiac given my daughters positive tTG test, he ran a gliadin and ema test, nurse called today and said it was all negative, what now??????

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dbmamaz Explorer
dbmamaz
Posted

From what i've read around here, the standard response is - try the diet anyways. You dont need a doctor's orders to quit gluten! Go off for 6 weeks, then try going back on and see how you feel. Many of us here did it without testing, and were amazed at how much better we felt. You really dont have much to lose, except a few weeks of eating bread and stuff.

Darn210 Enthusiast
Darn210
Posted

I would try the diet. You have to do all the research, shopping and cooking for your daughter, anyway. I don't want to make light of that . . . that will entail a lot of work in the beginning. However, for you to go gluten-free at the same time won't be that much additional effort.

kpyoung24 Rookie
kpyoung24
Posted
  • Author
I would try the diet. You have to do all the research, shopping and cooking for your daughter, anyway. I don't want to make light of that . . . that will entail a lot of work in the beginning. However, for you to go gluten-free at the same time won't be that much additional effort.

thanks for the advice everyone! is there such a thing as negative blood work and positive biopsy?? i ask because my daughter's gi said that there is no difference between "duodenitis", which i have been diagnosed with, and damaged/blunted villi. any info is appreciated!!!

aikiducky Apprentice
aikiducky
Posted

A negative bloodwork/positive biopsy combination is actually quite common in adults. Your doctor might be willing to diagnose you without a repeat endoscopy?

Pauliina

lightening16 Rookie
lightening16
Posted

Hello

I am not expert but from what I have read on here, there are lots of people that have had similar things happen. The blood test are not perfect. Some sites they are are 92% effective but if you look on the enterolab site they discuss it furthur and it looks like depending on the person then the results can be as 30% accuracy.

I had negative blood test but a positive response to the diet. Did a gluten challenge for 2 weeks and know that I have a problem with gluten. I am supposed to go see a GI but that will take half a year. I am not waiting to go gluten free.

They say that the biopsy is the "gold standard"... not the blood test.

Good luck

cruelshoes Enthusiast
cruelshoes
Posted

If it were me, I would try the diet anyway. It can happen for people to have negative bloodwork and positive biopsy results. Here is a link that may be of interest to you:

Open Original Shared Link

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative

This means that sometimes if your villi are still in the early stages of damage, your bloodwork may be negative - for now. Negative bloodwork does not mean you don't have celiac disease. Did they take samples during your endoscopy? If so, I would try to get ahold of the pathology report to see what the findings were.

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kpyoung24 Rookie
kpyoung24
Posted
  • Author

thank you everyone for your very helpful replies!! everyone here is so supportive!! i looked into that link and the research that is sighted there is really interesting, thx for the tip! im going to call my old gi tomorrow and request a copy of my records, hopefully that will help. my current doctor is mailing a copy of my lab results to me as well. hopefully i can put all the pieces together. i just know that I've got ALL the symptoms, including all the yucky gi stuff, the infertility issues, an unexplained rash on both elbows, and the diagnosis of hypothyroidism about 4 years ago. i just want answers so i can start feeling better. with any luck I'll get some, even if i don't i think I'll try the diet anyway. thx again everyone!! im sure you haven't seen the last of me...lol!

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      Positive biopsy

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      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
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      Fruits & Veggies

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      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
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      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
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      Positive biopsy

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      26F!
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