Onemoreceliac

Thank you for your answer. What are others DQ genes that I need test to run out celiac disease?

Yes, 2 weeks after biopsy. (Ttg) IgA and (Ttg) IgG were negative. IgA normal parameters (0,700-4,000) I had 4, 128 g/L and both anti endomisium IgA and IgG negative. 

14 hours ago, RMJ said:

While some people with celiac disease have very slow recovery of villi on a gluten free diet, some people do heal nicely.  Looks like you are one of those.  You certainly know that you should avoid gluten, since eliminating it led to healing of your villi.

Most people with celiac disease have a certain genetic pattern, but there is a small percentage who don’t have the standard celiac genes.

Did you have any antibody tests for celiac disease?  Or just the endoscopy and genetic tests?

Yes, 2 weeks after biopsy. (Ttg) IgA and (Ttg) IgG were negative. IgA normal parameters (0,700-4,000) I had 4, 128 g/L and both anti endomisium IgA and IgG negative

Hello. f 24

Last year, in January, I did an endoscopy and the results came back with celiac disease Marsh II. I kept a strict gluten free diet over a year and I did again an endoscopy 7 months later after the first one.

Results were saying that my villis are normal, no trace of any problem, everything normal. My gastroenterologist even ask me to do that genetic analysis about celiac disease and it came back that I don't have the genes for that. My doctor was surprised that my results and diet worked so well for me.

Today I talked with another doctor, who happens to have a specialization in nutrition and she looked all over my test results from the past year and said that I don't have celiac disease at all.

I asked how comes that? She said because my biopsy results look too good for a patient with celiac disease, even if I kept a strict diet. So now I'm confused, I also have dysbiosis and currently I'm trying to treat this. She said I maybe have an intolerance to gluten because of my bad microbiome, but definitely not celiac disease.

In January, I also had  vitamin D and iron deficiency (i took suplememts for 3 months and now I'm fine). Maybe they made a mistake with my first biopsy?

What do you think? Now I'm more confused than ever.

5 hours ago, Posterboy said:

Onemoreceliac,

Your symptom's can be explained by Low/NO Stomach Acid being misdiagnosed.

Low Iron can be caued by Low/NO Stomach Acid and it is often overlooked.

See this article entitled "Is achlorhydria a cause of iron deficiency anemia?"

The answer was a resounding yes! it could be and it (IDA) is being caused by too low a stomach acid!

https://academic.oup.com/ajcn/article/102/1/9/4564242

The

Could be from an Ulcer.....

Here is a nice article that will give you other options if you don't think it could be an ucler....

https://patient.info/signs-symptoms/left-upper-quadrant-pain-leaflet

Howard Hughe Medical Institute aka HHMI did a nice article about why Ulcers develop from Low Stomach Acid instead of the High Stomach Acid you often hear about...

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

Sleeping your left side might help your Heartburn/GERD.

Here is a  nice article about it......called advances in GERD.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886414/

I hope this is helpful but it is not medical advice.

I wrote Posterboy blog post about why and how some low/NO stomach acid can be confused for NCGS and/or Celiac disease it might help you to read it.

Good luck on your continued journeys in life!

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

Thank you. How can I test my stomach acid levels? In my country I never heard about a test like that. I heard about a test at home with baking soda and water, but it is accurate or safe?

Thank you so much.

1 minute ago, trents said:

By the way, are you on some kind of acid blocking medication?

Yes, I took them because my Dr recommend it, but not even a bit of improvement and I stopped them. I don't know if my stomach has too much acid or to little. Nothing seems to work. Also, on the internet are a lot of contradictory information regarding the diet for bile reflux and gastritis-duodenitis (eg: apple is good for binding bile out of the stomach, but bat for gastritis). Regarding the oats, I took them for about 1-2 months because it says it's helpful for binding the bile.

1 minute ago, trents said:

It might be more practical and less expensive to just trial elimination of oats and dairy for a period of time and see if your symptoms improve. SIBO, however, would likely call for antibiotics in the short term and dietary adjustments in the long run.

Ok, I ll try it. 

6 minutes ago, trents said:

Even though your oats are gluten free, cross contamination with wheat may no be the issue. About 10% of celiacs cannot tolerate the main protein in oats, avenin, which causes them to react in the same way as they do to gluten in wheat.

Also, it is very common for celiacs to be dairy intolerant. It can be caused by the sugar in milk (lactose) or a protein in milk (casein). Casein is known to blunt villi just like gluten for some celiacs.

SIBO is pretty common in celiacs.

Ok, thank you for your answer. I will get tested for lactose intolerance and Sibo and maybe one of them is the cause for my bile reflux. 

3 hours ago, trents said:

Are you still consuming dairy and oats?

Have you been checked for SIBO?

Yes, I am consuming dairy and gluten free oats. I did not get checked for SIBO..

Hello. 

Female, 24 y

I have been diagnosed with celiac disease one year ago by endoscopy, along with bile in my stomach, antral gastritis because of bile, low vitamin D and iron deficiency.

As treatment, I followed a gluten free diet, along with supplements for vitamins deficiency, I couldn't keep a 100% low inflammatory diet for gastritis. 

Second endoscopy: my villi came back to normal 100%, so the diet worked, but my gastroenterologist still found gastritis, no more bile and now- chronic duodenitis. 

My pain is mostly on the left side of the upper abdomen, sometimes I can't even sleep at night and my life is miserable. I don't know what to do anymore, why duodenitis if I had a strict gluten free diet and  why it's so hard to treat. 

My gastroenterologist recommend me a CT scan of my abdomen and pelvis to see if it's something more, but I don't want to be exposed to radiation a second time in a year( I have done before a CT scan without dye, due to a panick attack).

I don't know what to do anymore and try anymore. Please, do you have some tips or advice? Thank you.

Hello, I was recently diagnosed with celiac disease by doing first an endoscopy (results: celiac disease Marsh 2) but the doctor said I should run a couple of tests  to confirm.

All the tests came back negative with some exceptions:

IgA- above levels

Endomisium IgA- negative

Endomisium IgG - negative

B12 vitamin- normal parameters

D vitamin - very low levels

Iron - very low levels

I read if a person have celiac disease, IgA levels should be low, endomisium IgA and endomisium IgG should be above levels.

I am on a gluten free diet for about two weeks now, maybe the tests came out like this because of my diet? 

1 minute ago, knitty kitty said:

Try the book "The AutoImmune Protocol" by Sarah Ballantyne.  She's a doctor with Celiac and has Celiac kids.  She developed the diet, which has been scientifically proven to promote healing in Celiacs.  

You're actually ahead of the game, knowing you have Celiac Disease.  You will be knowledgeable and well practiced in the gluten free diet by the time your kids come along.  So...

No worries!

I really hope so, thank you for the book recomandation and your answers. 

Have a great day! 

34 minutes ago, Scott Adams said:

I would also like to add that there are around 10 celiac disease pharmaceutical treatments in the development pipeline:
https://www.beyondceliac.org/research/drugdevelopment/drug-development-pipeline/
so it is likely that by the time you have children there will be a more effective treatment for it, should they get it. Given what I've been reading about gene editing technology like CRISPR, I think it's even possible that in a couple of decades there may even be a way to cure people with celiac disease.

I really hope so, thank you for the information.

1 minute ago, Sabaarya said:

I know, I was the same when I just got diagnosed:)

What was your symptoms? Have you had biopsy?

For about 2 years and half I had and still have pelvic pain, bloating, stomach ache, diahreea, fatigue, migraines, always in a bad mood.

All good damn doctors said I had iritabile bowel syndrome and they said I stress to much about it and just relax and take some probiotics.

I went for one more opinion and the gastro performed colonoscopy and endoscopy with biopsy. Results: celiac disease Marsh II. 

I think I can manage the gluten free diet, but I'm worried about having kids, because they will have the gene and might develop celiac disease..

3 minutes ago, Sabaarya said:

Apparently almost 40% of population have celiac genes but only 1% develop the disease through their life. If you have disease there is 50% of chances that you will pass it to your children but still doesn’t mean that they develop disease through their life. And if you have celiac genes your mother of father has it and your sister has it for sure,but as I said not everyone developes disease. I’m the only one in the family that have it for now. I have 3 year old son,his doctor checked his antibodies and they were negative,but I’m planning to make an appoitment with pediatric GI and have him check genetic panel and antibodies for my son. My close friend had genetic test and she has positive celiac genes,her brothers got checked and they have celiac genes as well,but none of them have active celiac disease.

Lucky me..

Thank you for your answers.

6 minutes ago, Sabaarya said:

Hi. The hardest part of this disease is explaining to everyone how serious is this disease and that they need to respect and be supportive,especially family members and close people and friends. I’m agree with knitty! I was having problems with my husband at the beginning but after he came with me to my appointment and after my doctor explained everything in details he changed his attitude towards my diagnose and diet. Of course it’s difficult for him but he tries. It’s very difficult to change all your eating and life habits in short period of time. 
You can take him to your appointments. Even my dietitian mentioned that most of her patients have problems with they family members,partners and she said that usually she makes one appointment for whole family to talk and explain family members as well how important is gluten free for celiac patients. You can try that:). Don’t worry everything is gonna be fine:)

It is possible to pass on the disease to my children? I'm the only one in the family who has the disease, my parents are fine, my sister is fine, my aunt's and uncles are fine, my 8 cousins are just fine, so my grandparents ..

Hello everyone, I'm a newly diagnosed celiac.

How strict my gluten free diet should be?

I read on the internet that even kissing your partner who is not gluten free is bad for your gut. It's that true? 

I had a discussion with my boyfriend of 2 years about kissing part and he is so angry about it and says that he doesn't want that from a relationship and he doesn't think he cannot kiss me everytime he heats gluten.

I'm feeling kinda sad about this 😔 

Please tell me the true, it is that bad if I kiss him ? 

Thank you, I already feel bad about my diagnosis and he doesn't help me very much by not being supportive...