Celiac and so many other issues...

[LyndsRose]

I’m sorry i am long winded, but sometimes kinda funny so...

I was diagnosed with celiac 3 years ago. Corrosive esophogitis along with it,  IBS for about 15 years, one time chronic fatigue, depression has become my companion, and anxiety is a cute side car of the past few years. My prelude to celiac was 6 months of diarrhea (which started in June in New Orleans. Brought new meaning to the term ‘swamp a$$’), intense pain, blood in stool, oh and bonus: no weight loss (I realize this is a good thing, but might have been nice as I can’t seem to shift ANY weight off me) 

Then i was undiagnosed with celiac. Initially,  I had an endoscopy that showed villous blunting in my small intestine (duodenum). They told me don’t eat gluten and sent me on my way (no nutritional support, they were cool). I went gluten-free and felt amazing for about 5 months. So much energy! So little pain! Then all of my symptoms came back while still maintaining my gluten-free diet. No cheats, cooked at home mostly, diligently read ALL ingredients. A year later I had a follow up endoscopy, where they told me to eat bread prior. Never said how long prior but whatever. I ate white bread and ohhh the pain! They scoped me and said I don’t have celiac anymore, the blunting was gone. Sent me on my way. I asked my physician for the blood test, they obliged and came back negative. They wanted me to do the breath tests and FODMAP, which I admittedly haven’t done yet (unemployment was actually awesome, aside from the no insurance part) 
Is it possible that being gluten-free for a year healed the villous blunting? I ate gluten after that scope for a few months and full symptoms were back, added bonus of hair loss and a really pesky tinea versicolor episode that I am still dealing with. Also some dyshidrotic eczema. My GI tract is the gift that keeps on giving. 

The fun really started the other night where I had a gastroparesis episode. It was so weird. None of my dinner digested at all. Pain, bloating, sour burps for 6 hours until I finally vomited. I am strict gluten free since April, and I have daily diarrhea or odd stools, near daily pain, no appetite whatsoever, no weight fluctuation, tinea versicolor not responding to prescription topicals, increased hair loss, brain fog, and my friends continue to wonder how I am single. 
 

Does this sound familiar to ANYONE? Should I be pushing for further tests? Is this all celiac? 

[trents]

9 minutes ago, LyndsRose said:

I’m sorry i am long winded, but sometimes kinda funny so...

I was diagnosed with celiac 3 years ago. Corrosive esophogitis along with it,  IBS for about 15 years, one time chronic fatigue, depression has become my companion, and anxiety is a cute side car of the past few years. My prelude to celiac was 6 months of diarrhea (which started in June in New Orleans. Brought new meaning to the term ‘swamp a$$’), intense pain, blood in stool, oh and bonus: no weight loss (I realize this is a good thing, but might have been nice as I can’t seem to shift ANY weight off me) 

Then i was undiagnosed with celiac. Initially,  I had an endoscopy that showed villous blunting in my small intestine (duodenum). They told me don’t eat gluten and sent me on my way (no nutritional support, they were cool). I went gluten-free and felt amazing for about 5 months. So much energy! So little pain! Then all of my symptoms came back while still maintaining my gluten-free diet. No cheats, cooked at home mostly, diligently read ALL ingredients. A year later I had a follow up endoscopy, where they told me to eat bread prior. Never said how long prior but whatever. I ate white bread and ohhh the pain! They scoped me and said I don’t have celiac anymore, the blunting was gone. Sent me on my way. I asked my physician for the blood test, they obliged and came back negative. They wanted me to do the breath tests and FODMAP, which I admittedly haven’t done yet (unemployment was actually awesome, aside from the no insurance part) 
Is it possible that being gluten-free for a year healed the villous blunting? I ate gluten after that scope for a few months and full symptoms were back, added bonus of hair loss and a really pesky tinea versicolor episode that I am still dealing with. Also some dyshidrotic eczema. My GI tract is the gift that keeps on giving. 

The fun really started the other night where I had a gastroparesis episode. It was so weird. None of my dinner digested at all. Pain, bloating, sour burps for 6 hours until I finally vomited. I am strict gluten free since April, and I have daily diarrhea or odd stools, near daily pain, no appetite whatsoever, no weight fluctuation, tinea versicolor not responding to prescription topicals, increased hair loss, brain fog, and my friends continue to wonder how I am single. 
 

Does this sound familiar to ANYONE? Should I be pushing for further tests? Is this all celiac? 

"Is it possible that being gluten-free for a year healed the villous blunting?" Certainly.

If you have been on a gluten-free diet for any length of time it would be necessary to resume eating a significant amount of gluten for 4 to 6 weeks for either the blood tests or the endoscopy/biopsy to be valid. But at this point, further testing for Celiac activity seems pointless. No need to wreck your health for what you already know from previous testing and from experience.

I think it important to do the breath test and FODMAP. SIBO is common with Celiacs. I would quit eating gluten immediately and get the SIBO testing done as soon as possible. I would also suggest you consider having developed intolerances/allergies to non gluten foods. This is common with Celiac Disease which tends to produce immune system dysfunction in a larger way because of "leaky gut syndrome."

Welcome to the forum, by the way.

[LyndsRose]

46 minutes ago, trents said:

"Is it possible that being gluten-free for a year healed the villous blunting?" Certainly.

If you have been on a gluten-free diet for any length of time it would be necessary to resume eating a significant amount of gluten for 4 to 6 weeks for either the blood tests or the endoscopy/biopsy to be valid. But at this point, further testing for Celiac activity seems pointless. No need to wreck your health for what you already know from previous testing and from experience.

I think it important to do the breath test and FODMAP. SIBO is common with Celiacs. I would quit eating gluten immediately and get the SIBO testing done as soon as possible. I would also suggest you consider having developed intolerances/allergies to non gluten foods. This is common with Celiac Disease which tends to produce immune system dysfunction in a larger way because of "leaky gut syndrome."

Welcome to the forum, by the way.

Thank you! I hadn’t considered SIBO, and you are right, I need to do the other tests. Do the work. 
thank you very much for your time and insight! 

[Ennis-TX]

2 hours ago, LyndsRose said:

They scoped me and said I don’t have celiac anymore, the blunting was gone. Sent me on my way. I asked my physician for the blood test, they obliged and came back negative.

Well Celiac never goes away, it is a genetic autoimmune disease (Gene can be dormant at birth but permanent once active). Sure the damage can heal in a year or so, but if you ever eat gluten the immune system will start attacking your intestines again and normally it is worse then it initially was.

The other food issues trents mentioned should be considered, I have noticed a trend of others including myself ending up with a new food intolerance or sensitivity after a accidental gluten exposure . These might go away in 6 months to a few years or might be life. A Elimination diet should be consider to track it down, eating just 1-3 whole food for a week, then changing out one for a new one for a few days then removing it again to note any changes bring it back in and drop one. Keep this up trying to figure it out. Troublesome and annoying but effective. Common issues are dairy, soy, oats (10% of celiacs react the same as wheat regardless), legumes (peanuts), Nightshades (tomatoes, peppers, potatoes), corn, garlic, onions, and I feel there are a few I missed.

[trents]

Yes, healing of the villi blunting after eating gluten-free for a significant period of time does not mean you aren't a Celiac anymore.

[Kate333]

"They scoped me and said I don’t have celiac anymore, the blunting was gone."

 

Hi LyndsRose, I would contact your GI doc to clarify the findings (or you can always request a copy of the endoscopy report).  As others have noted, celiac disease does not "go away" even if your gut has entirely healed from previous injury.  Thus, it is VITAL to remain on a strict, gluten-free diet to avoid further gut damage and continued healing.  It sounds like that is why you are continuing to have so many gut and other issues, since you said you returned to eating gluten after your scope.  Personally, I would ask for another consult with the GI (many offer phone or virtual appts) to revisit that continued gluten exposure issue, your dietary habits, before deciding to pursue additional evaluation/testing for SIBO, other allergies which can be super expensive, esp. without insurance.  

I would also suggest requesting a TTG blood test on a regular basis to assess your current level of gluten antibodies to make sure you are not currently getting exposed to gluten, even inadvertently, which can happen if you eat out a lot or eat packaged, processed food.  (This test is fairly inexpensive, about $100 in the USA out of pocket without insurance, and does not require a fast or eating gluten beforehand.) 

Instead of thinking "I must stay gluten-free for the rest of my life"...I find it easier to tell myself that I have to stay gluten-free "only until a cure or vaccine is found"...I am hoping that the celiac disease community can soon benefit from all the lessons learned by currently fast-tracking medical research to conquer Covid.   If we can get a safe, effective vaccine (or more than one!) for Covid in under a year, I am hopeful that celiac disease researchers can also adapt similar fast-tracked protocols, approaches to the search for AI disease cures...]

I would also add that depression/anxiety can cause big time fatigue AND indigestion issues.  So make sure you are considering both physical and mental health healing in tandem.  Not easy in this stressful pandemic.  But so important!!

 

 

[DJFL77I]

he loves swamp a$$

 

 

 

[DJFL77I]

On 11/16/2020 at 11:45 PM, LyndsRose said:

 IBS for about 15 years

IBS = undiagnosed celiac

[trents]

5 hours ago, DJFL77I said:

IBS = undiagnosed celiac

Not true. They are two different medical conditions. IBS affects the large bowel. Celiac Disease affects the small bowel.

[DJFL77I]

I don't think they even have a definitive way to diagnose ibs

[Awol cast iron stomach]

On 11/22/2020 at 3:11 AM, DJFL77I said:

IBS = undiagnosed celiac

Ha ha ha. A few of us on the forum where misdiagnosed as such. 🤦

[Awol cast iron stomach]

On 11/22/2020 at 8:45 AM, trents said:

Not true. They are two different medical conditions. IBS affects the large bowel. Celiac Disease affects the small bowel.

Correct, but some of us were diagnosed in past as such based on symptoms only without formal testing for either condition. So for some of us in a certain age bracket this did unfortunately occur. 

I for one am glad as you point out it is more definitive they are 2 seperate legitimate conditions. Thankfully now it does not occur as often now. 

Respectfully, there are those out there in society who believe both IBS and Celiac are made up even to this day. I have worked with people in the past if you actually tell them your diagnosis who respond "maybe you have colitis that is what my aunt has" 🤦

Edited November 26, 2020 by Awol cast iron stomach
Spelling

[AlwaysLearning]

Celiac is linked to problems in both the small and large intestines. Autoimmune reactions rarely limit themselves to just one area of the body. But yes, when they do an endoscopy and look for damage, they are looking at the section right at the top of the small intestine.

LyndsRose, congratulations on getting results from an endoscopy that showed healed villi! That means you are doing really well at avoiding gluten. But I would immediately start looking for a new doctor. A doctor that knew anything at all about celiac would NEVER ask you to start consuming gluten again, for any reason.

[trents]

AlwaysLearning, can you link some information to substantiate your claim? What we do know is that statistically speaking, Celiacs are more likely to have other autoimmune conditions, some of which affect the large bowel such as Colitis. And if celiac disease is causing incomplete digestion of food, then I can see that IBS could be an indirect result.

[AlwaysLearning]

Sorry, I'm not going to get into an argument over symantics. I said "linked to", which you have already agreed is true, so I'm not sure why you are asking me to prove my statement.

[trents]

My apology. I misunderstood what you meant by "linked to." Sounds like we are talking about the same thing. I was reacting to the fact that there is a lot of confusion out there among laity about various intestinal maladies.