Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

First Gastritis GERD and now Celiac?


leej91

Recommended Posts

leej91 Newbie

Hello folks, 

I'm looking for some advice on whether or not people have had similar symptoms/on-set that eventually led them to the Celiac diagnosis.

So 8 weeks ago I started feeling lethargic, short of breath and I was having heartburn (but I'd never had it before, to my knowledge, so I didn't know what it was). Prior to this, I was also transitioning out of a phase of high fat, low carbohydrate diet  (ketogenic) which I did to lose weight. I've done this type of diet for months at a time, several times, and I've always had more energy, felt great, and lost weight, I always felt worst when I would go back on carbs. So the warning sign of not tolerating carbs was there I guess, and to be honest it was carbs - pizza, pasta, rice, chips; I rarely ate sugar in terms of sweet things or fruit in general in life, not even soda.

3 weeks later, after a few beers, I threw up violently and had massive acid reflux symptoms which affected my throat, breathing, everything; I was diagnosed with mild antral gastritis and grade B GERD, as confirmed by a GI scope procedure. I responded really well to PPI/antacid treatments, which I still use. I changed my diet completely: removing alcohol, coffee, spicy food, etc... I've had little or no acid symptoms since treatment started.

During this whole period I was having constipation problems -- and then water stools -- then back to C, and I also lost 2 stone in weight: or 28 pounds, mostly in a 5 week period. Now, week 8, I have gained back my appetite and 12 pounds of the 24 lost and my bowel movements have become stable (but not normal, for me). 

However, some things have persisted or have been left unexplained:

I had pain in my pelvis, lymph node swelling in my groin and lymph node swelling in my left armpit which was painful. They come and go, but the armpit sometimes flares up 20-30 minutes after eating. I also have discomfort in my bowel region, but it's not like spasms with D. It comes and goes with bowel movements. 

I now go to the toilet much more regularly; it used to be usually every second day, now it's 2-3 times per day and it's a lot more than it used to be. mostly normal looking stools but sometimes hard little rocks. 

I get a small painless flat rash of red dots on my hands, upper side, near the thumbs usually; sometimes 20-30 minutes after eating (once co-incidentally with armpit swelling). Also it happens sometimes when I'm passing stools. I've noticed this rash appear with: eating a lot of whole wheat bread; eating chocolate chip cookies, eating french fries. The rash disappears usually after 30-40 minutes; it doesn't happen every day but at least every second day.  I've checked for other rashes but haven't found any. 

I have constant mouth ulcers and my gums are inflamed often. 

My pee has not been the same. It's darker but not outside of normal yellow ranges. But, I used to mostly pee clear completely, as it were water, for my whole life in living memory. Now, I pee and it's always yellow, usually very pale yellow inside normal ranges. But, it's different for me. 

My blood test from when this started has shown slightly elevated bilirubin level (by only 1 point, so the doctor effectively discounted it as being significant); My blood tests have also shown very slightly high neutrophil levels, which I think have gone down since GERD treatment. All other tests are normal.

I have a dry mouth often, I drink a ton of water. Since this all happened, I have dry eyes and got prescribed eye drops. I've always had perfect vision before now and don't wear glasses or anything. Also, my skin on my face is very dry. 

I still suffer from fatigue and shortness of breath.

I did have a lot of burping and passing gas at the height of the gastritis; now, however, that has gone away and things are normal. I also don't have stomach pains often or D, or even C now. 

I asked the GP in my most recent visit, if they thought I could have a food intolerance: they said that I'd likely have a rash everywhere and it would itch. Plus, I've never had a food intolerance to anything or allergy in my life until now...

I'm 24, 5'8, 10 stone 6 pounds, M. No underlying health issues. I was in decent physical shape before all of this. 

So my questions are:

1) could this be celiac: did you guys have any of these weirder symptoms like lymph node, dry eyes, higher bilirubin, shortness of breath?

2) I don't have D and C often anymore in spite of going to the toilet more often, does this rule out Celiac? 

3) My plan was to eliminate gluten for a week or two, and see if my fatigue, libido, urine colour and other symptoms go back to normal. If that happens, I plan to re-introduce gluten and insist on testing. Would you recommend this? I don't believe my GP is convinced of testing now. 

 

I am continuing to see doctors to rule out other causes, but this is one that I feel may be secretly behind some of my symptoms. 

Thanks in advance!

 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Irene Joanne Explorer

My nephew was diagnosed with celiac when my sister took him to the doctor because he was always complaining he couldn't breath and was out of breath. Blood tests and biopsy confirmed celiac. 

Joan Tendler Newbie

When you were on the ketogenic diet, what kind of fats were you eating? Your symptoms sound like an imbalance of omega 6 to omega 3 fat, so I was wondering if you were eating a lot of vegetable oil, like canola, soybean, etc., or nuts and seeds. Many people, esp. Northern Europeans, can't metabolize omega 6's from plants, so they end up forming free radicals that damage the small intestine, causing all kinds of digestive problems. Olive oil is fine though-hardly any omega 6's. I became gluten-intolerant when I ate a lot of nuts and seeds for a couple of months. I was so bloated I thought I was pregnant (embarrassing as that is to say!). I stick strictly to butter and chicken fat now-very healing for the digestive system-and I can now eat sourdough bread.

leej91 Newbie
21 hours ago, leej91 said:

 

Thanks for the responses guys; 

Joan - On ketogenic I used strictly coconut oil, olive oil and unsalted butter. Any other fats were from eggs and fatty cuts of meat. Some avocado too. 

Joan Tendler Newbie

That does sound better than what I did! The other side of too many plant omega 6 fats is too little animal omega 6 fat, which is arachidonic acid. I think ARA is very misunderstood-the best sources are a rich chicken broth, which is very healthy. ARA has a lot to do with the health of the whole digestive system, including the mucus layer and gut repair. When I was struggling with this I found a study that showed that when mice had no ARA they all had colitis, among a lot of other problems.

GFinDC Veteran

Hi LeeJ,

It's best not to start the gluten-free diet before being tested.  The celiac disease tests are for an immune reaction.  If you have reduced the antibodies by stopping eating gluten for a while then the tests aren't accurate.  You said you were on a ketagenic diet and that symptoms began after resuming a carby diet.  You also said you had symptoms after eating gluten.  Those 2 things seem to indicate a food reaction of some kind.

There are many different symptoms that celiac disease can cause, there are around 300 possible symptoms.  Some people have no symptoms and yet they still have celiac disease.  So the best thing is to go ahead and get tested.  The initial test is a blood draw to check for elevated levels of certain antibodies to gliaden, a protein in wheat gluten.

Another thing that might help is to consider conditions your relatives might have had.  Celiac disease is related to genetics, and so it can run in families.  However the genes are also linked to a variety of other auto-immune diseases.  This article link describes some of the related conditions.   What this means is that one of your relatives or you might have some of these conditions.  So if there is a history of any of these related conditions in your family, it could indicate a higher chance of celiac disease related genes.  They say auto-immune diseases run in packs, but they also run in families.   https://www.celiac.com/categories/Celiac--Disease--Research..--Associated--Diseases--and--Disorders-c-3344

You can also have a gene test done, which tells you if your body is likely to develop the condition, not that you have it now.

People have posted in the past about problems with gaining weight.  Often doctors assume you have to be skinny  to have celiac disease, but that is not always true.  Some people gain weight with celiac disease, which seems counter-intuitive.

The auto-immune reaction in celiac can target many different organs in the body.  Sometimes people have skin problems, nerve damage, liver damage, joint damage, thyroid damage, hair loss, etc. etc.  The symptoms are not always primarily digestive symptoms, but some other seemingly unrelated body organ.  So it can be very tricky to diagnose celiac disease from symptoms alone.  It sounds to me like you are having some lymphatic system damage.  I'd definitely want to get tested for celiac disease if I were you.  You don't want to let that kind of damage continue.

There is a Newbie 101 sticky at the top of some forum sections.  It may help answer some questions.

Welcome to the forum Leej! I hope this helps some. :)

 

flutegal64 Newbie

One of the things with weight loss is it could set off your gallbladder too.  Some of your symptoms sound like gallbladder.  Has your doctor tested for that yet?  They can do a HIDA scan.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



leej91 Newbie

No, but I got two ultrasounds done: 4 weeks apart on the full abdomen. No abnormalities detected. 

 

 

cyclinglady Grand Master
1 hour ago, leej91 said:

No, but I got two ultrasounds done: 4 weeks apart on the full abdomen. No abnormalities detected. 

 

 

A HIDA scan can test for functionality of the gallbladder.  The ultrasound is looking for stones, etc.  Here is an explanation:

Open Original Shared Link

I'm bringing this up because every ultrasound I ever had was normal.  It was not until I had a surgeon order the HIDA that it was discovered that my gallbladder was not functioning at all.  By that point, it was rotting and infected.  So, I had the surgery.  Cousins had their gallbladders removed when the HIDA score was less that 20% functionality.  I must also add that I did not have classic gallbladder symptoms either.  

 

cyclinglady Grand Master

Oh, I would push for celiac testing.  :)

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442

    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...