Furious, confused, and REALLY tired of this.

[MissTeaMuse]

Hey y'all, I will try and make this short and sweet. Hoping someone can help me figure out what my next move should be! I was tested July of 2021 by my endocrinologist and told I "need to stop eating gluten". I wasn't given follow-up appointments with any other doctors, or even told I would need to do that. Fast forward to now, I have been DILIGENTLY gluten-free (I don't even dine out at restaurants anymore for fear of CC) since I was given that "diagnosis". I saw an allergist recently who did the genetic panel, after viewing the result she told me that i am "very low risk" for celiac. I dug out the old bloodwork online from the Endo, it was as follows:

ttg dGp Positive ** Endomysial antibody IGA negative ** ttg IGA <2

The current tests from the allergist:

HLA-DQB1*02 Negative ** HLA-DQB1*3:02(8) Negative

HLA-DQA1*05 Positive

I don't know what to think, or where to go from here. I have an appointment with a GI next week, but I am not sure what to ask for. Previous to July of '21 I had my gallbladder out because of a huge stone that caused me debilitating pain. The reason for the testing in july of that year was I was still having awful gut issues. I also now have TERRIBLE acid reflux, if I don't take famotidine and pantaprozole daily it is so bad I'm afraid to eat anything at all. Any insights are so incredibly appreciated, I am at a loss here. Google just further confuses me at this time- too much information!

Thank you in advance!!

[knitty kitty]

@MissTeaMuse,

Welcome to the forum!

You have "HLA-DQA1*05 Positive" which is a gene for Celiac Disease.  Your DGP antibody test is positive.  These are positive test results for Celiac Disease.  It may be a low risk, but it has happened.

Terrible acid reflux is actually a symptom of low stomach acid, so taking PPI's further reduces stomach acid.  PPI's also cause continuing inflammation in the small intestine right where vitamins and minerals are usually absorbed, contributing to malabsorption of essential nutrients, and resulting in micronutrient deficiencies.  

I also had terrible acid reflux.  Thiamine deficiency causes low stomach acid.  I was put on PPI's which causes further thiamine deficiency.  Nausea is also a symptom of Thiamine deficiency.  Some medications like famotidine actually cause thiamine deficiency by blocking the thiamine transporters which are special doors through which thiamine enters the cells.  You can have normal blood levels of Thiamine, but still have a functional deficiency because the Thiamine cannot get into the cells and do its work.

I had to have my gallbladder out.  Gallbladder dysfunction and stone formation are symptoms of Vitamin B1 Thiamine deficiency.  

I also had Mast Cell Activation Syndrome and Histamine Intolerance which frequently occurs in Celiac.  High levels of histamine can promote sensitivity to other foods which can then become allergies.  So, I adopted the AutoImmune Protocol Diet which reduces inflammation and helps heal the digestive tract.  I chose low histamine foods.  

I supplemented vitamins and minerals to correct nutritional deficiencies.  Vitamin D helps regulate the immune system and reduces inflammation.  Thiamine and the other B vitamins are essential amino acids that our bodies need to function and heal.  The B Complex vitamins and Vitamin C help reduce histamine levels.  Magnesium helps calm inflammation, too.

What sort of gluten free foods are you currently eating?  Do you eat processed gluten free foods?  Gluten free facsimile foods are not required to be enriched with vitamins and minerals like gluten containing products.  Have you talked with a nutritionist?

 

[MissTeaMuse]

Thank you for your insight! I have spoken to a nutritionist, who just told me to “keep up the good work” of not eating gluten. I don’t eat processed foods at all, and I have many other food allergies that make me feel like I can’t eat anything really except baked chicken and rice. AIP has been attempted but is not viable, I am already super restricted as it is- allergic to most fruits and vegetables so it becomes a carnivore diet, which is just a recipe for constant diarrhea, and I have to work for a living. I am unable to tolerate B complex vitamins, they make me strangely rage angry when I take them! It’s the weirdest thing. What did you do about your acid reflux? Did you stop taking the medicine? Like I said, super frustrating and confusing - and the doctors don’t seem to know what they are even talking about. Thank you again.

[bookless]

When I saw my gastroenterologist, she told me I did not have celiac because my IgA was not elevated. When I saw my results it said in red numbers that my IgA was less than 5. I looked it up and found out about IgA deficiency. IgA deficiency is 10-20x more prevalent in people with celiac. I brought that to my doctor and she said that maybe I did have celiac. I hadn’t a colonoscopy in 10 years so I self referred myself to get one. The surgeon was great and said he would look at everything he could. My gastro ordered an endoscopy for my esophagus but the surgeon said he would go down to my small intestine to look at celiac. My gastro diagnosed me with liver disease and told me to just lose 10% body weight. I did and nothing changed. I have been looking for relief from abdominal pain for decades, seeing doctors, naturopaths, acupuncturists ever since I was “anorexic” to being “obese”.  I started going gluten free and waiting for my biopsy results.  My abdominal pain is gone.

[knitty kitty]

Welcome to the forum, @bookless!

 

[knitty kitty]

@MissTeaMuse,

I stopped taking the PPI's because I got so sick from them.  PPI's are sulfa drugs.  A hypersensitivity to Sulfites and sulfa drugs is common in Celiac Disease.  I have developed Type Four Hypersensitivity to Sulfa drugs.  Being sensitive to perfumes, scented cleaning products, certain foods and other sulfa containing medications are symptoms.  

There are certain foods that have molecules that our bodies can mistake for gluten.  Casein in dairy, avenin in oats, yeast, the protein in rice, and proteins in Chicken meat.  I removed all of these on the Autoimmune Protocol Diet, plus I chose low histamine foods.  Within a few weeks I was feeling better on the AIP diet and vitamin supplements than I had felt in years.  As my histamine levels got lower I was able to tolerate more foods.  

You probably were taking a B Complex that contained a form of Niacin that causes flushing.  Flushing is normal and even desirable after taking Niacin as nicotinic acid (not at all the same as nicotine in cigarettes).  Extreme flushing is common if you are deficient in Niacin.  The initial flushing goes away after thirty minutes or so.  The episodes of flushing gets less and less the longer Niacin is taken and the body replenished its stores.  Niacinamide and tryptophan (other forms of Niacin) do not cause flushing.  You could look for a B Complex supplement that has a nonflushing form of Niacin like Niacinamide.  You could take each of the eight B vitamins separately.  This is what I do because I take extra Thiamine.  

Yes, doctors aren't really knowledgeable of vitamin deficiencies in Celiac Disease.  

[knitty kitty]

@bookless,

I developed Non-Alcoholic Fatty Liver Disease (NAFLD).  

NAFLD can be caused by Thiamine deficiency.  My NAFLD resolved after supplementing with Thiamine Vitamin B 1.  

Anorexia and obesity can occur in Thiamine deficiency.  I've experienced both at different points.  

In Thiamine deficiency, the body burns fat and muscle as fuel, hence Anorexia.  In Thiamine deficiency with an excess of carbohydrates, the body stores the extra calories as fat because it doesn't have enough Thiamine to properly burn carbohydrates for fuel, resulting in obesity.  

Doctors seem to neglect the fact that Celiac damages the small intestine where vitamins and minerals are absorbed.  This malabsorption results in malnutrition.  Correction of nutritional deficiencies is part of proper Celiac care.  

 

[Scott Adams]

I agree with @knitty kitty, and low genetic risk does not equal zero risk of developing celiac disease. In your case the positive blood test should have been followed up with an endoscopy, but if many of your symptoms went away after going gluten-free, then it was likely the correct diagnosis.

[MissTeaMuse]

I had a back and forth with the allergist this morning who is still insisting these numbers do not indicate a positive celiac diagnosis. She said they indicate a gluten “sensitivity” (she put the word in quotes, not me)- like I said, so incredibly exasperating 🥺

[Scott Adams]

NCGS is possible too, but the normal step after the positive blood test would have been to do an endoscopy to confirm the diagnosis, and since they advised you to go gluten-free without that test you will likely never know, unless you want to go through a gluten challenge to find out. Whether it is NCGS or celiac disease, the outcome would be the same and you should be gluten-free.

[knitty kitty]

@MissTeaMuse,

@bookless is correct about Total IgA needing to be checked when testing tTg.  Anemia and Diabetes can cause false negatives.  

A gluten "sensitivity" is like being "a little bit pregnant".  A positive is a positive.  How high the numbers are on the test doesn't correlate to the severity of damage in the small intestine.  Low numbers don't mean low "sensitivity".  The numbers come down over time as long as you remain gluten free.  These tests measure the amount of antibodies produced against gluten.  No gluten exposure, lower antibody levels.  

Gastrointestinal beriberi caused by a deficiency in Thiamine can cause gastrointestinal problems.  It concerns me that you're so ill taking the PPI's. 

I do hope you feel better.

[MissTeaMuse]

Thank you - all of you for your replies! The allergist keeps telling me this test is not correct because it literally just says the following:

Gluten Sensitivity Screen

Ttg/dpg

abnormal

positive

she says it should have some sort of numbers. I’m seeing a GI for the first time on Monday- and printing all of this out. I’ve never had an endoscopy and I guess now it won’t really help since I have been so staunchly gluten-free for nearly 2 years now. The PPIs do work for the reflux, as long as I take them daily. I’m only sick when I don’t take them- even water makes me miserable in that case.

[RMJ]

It is unusual not to have numbers, but that doesn’t mean it is wrong! I’m glad you’ll be seeing a GI. Please be sure that the GI knows you are gluten free.  Antibody levels go down when a patient is gluten free. We’ve heard plenty of stories on the forum of someone being tested or retested for celiac disease when gluten free and being told they don’t have it.

[MissTeaMuse]

Will do, thank you! I feel sort of bad for this GI, I’m bringing a folder of all the things to go over 😆 

[bookless]

PPIs can increase your risk of NAFLD. I am glad you got off of them.

[Grammy9]

9 hours ago, bookless said:

PPIs can increase your risk of NAFLD. I am glad you got off of them.

Diagnosed 3 years ago by GI. At age 73. Never been sick in my life. You’re right it is totally overwhelming. Especially when you have a spouse that can’t understand it. I have DH reaction. But the gut pain is unreal. Dermatology tests showed allergy to wheat - negative! Sure! Allergists and dermatologists are not always the best source for diagnosing Celiac. Celiac many times comes with lactose intolerance. I tried lactose free milk. Took time for me to realize that I was still reacting to that. Oatly milk is the only one I can tolerate. Added vitamins. Huge improvement. I thought at my age it was time to enjoy eating out more. NOT! Not happy to be cooking at home but healthier. We travel a lot! Always have gluten free snack in my purse. Thought I could leave my kitchen as is. NOT! Convincing my husband was something else. It is overwhelming no doubt. But a good GI and accepting what you need to do to stay healthy will make a big difference. Hang in there. It will get better. 

[Grammy9]

Just now, Grammy9 said:

Diagnosed 3 years ago by GI. At age 73. Never been sick in my life. You’re right it is totally overwhelming. Especially when you have a spouse that can’t understand it. I have DH reaction. But the gut pain is unreal. Dermatology tests showed allergy to wheat - negative! Sure! Allergists and dermatologists are not always the best source for diagnosing Celiac. Celiac many times comes with lactose intolerance. I tried lactose free milk. Took time for me to realize that I was still reacting to that. Oatly milk is the only one I can tolerate. Added vitamins. Huge improvement. I thought at my age it was time to enjoy eating out more. NOT! Not happy to be cooking at home but healthier. We travel a lot! Always have gluten free snack in my purse. Thought I could leave my kitchen as is. NOT! Convincing my husband was something else. It is overwhelming no doubt. But a good GI and accepting what you need to do to stay healthy will make a big difference. Hang in there. It will get better. 

Also, gluten is in almost everything! Meds. Cosmetics. Lotions. Face Wipes. Crazy!

[RecoveredCeliac]

5 hours ago, Grammy9 said:

Also, gluten is in almost everything! Meds. Cosmetics. Lotions. Face Wipes. Crazy!

I've been gluten free for 2 years..  its actually very easy bein gluten free

[MissTeaMuse]

On 2/11/2023 at 11:58 PM, bookless said:

PPIs can increase your risk of NAFLD. I am glad you got off of them.

I’m not off of them- if I don’t take them, I get horrific acid reflux even from drinking water. I think another person in the replies above said they no longer take them, though. Hopefully the GI will give me some answers tomorrow and I can get off them, too!!

[bookless]

19 minutes ago, MissTeaMuse said:

I’m not off of them- if I don’t take them, I get horrific acid reflux even from drinking water. I think another person in the replies above said they no longer take them, though. Hopefully the GI will give me some answers tomorrow and I can get off them, too!!

Some say sodium alginate can help keep reflux down but I have not tried it myself because I don’t have reflux. There is probably a reason behind why your body is refluxing so I hope it gets sorted out.

I only used PPIs for a week or so as a precaution after my cardiologist burned my esophagus during an ablation. It made my liver enzymes shoot up and upset my stomach.

[knitty kitty]

PPI's are not meant for long term use.  

Have you tried taking a magnesium supplement after meals?   Many Over the counter antacids contain magnesium.

Not producing enough stomach acid is called Achlorhydria.

https://www.ncbi.nlm.nih.gov/books/NBK507793/

 

[Grammy9]

When I was first diagnosed with celiac I would loose my voice and an ENT determined that acid reflux was burning my vocal cords. The GI did an endoscopy and saw a hernia on my esophagus and that the spinctor was stuck open. Had surgery (first time in my life) and it helped but I still don’t tolerate citrus well. Nothing major just better off without it. I’m learning also that you can find most foods gluten free. They are more expensive and you have to prepare them but it’s doable. It’s just all consuming as most diseases are. You change your way of life and therefore live happier and more comfortable. Sometimes the harder part is getting those others in your life to understand your problem. Socializing is not the same. But if your friends and family love and understand you they will adapt also. It’s a life changer but most diseases are. 

[DebJ14]

Our son was being treated for pericaditis and lupus when he was a teen.  Because he was on large doses of Plaquenil, NSAIDs, and Prednisone he was prescribed a PPI.  Instead of just a 14 day course as now recommended, he was on it for nearly 2 years.  He was misdiagnosed, so the only drug he actually needed was the steroid for the pericarditis. It was drug induced, not systemic lupus.  Once we knew that, we began the process of weaning him off the drugs under medical supervision.  He ended up with NAFLD, which the gastro pinned on the combo of all those drugs  for such a long time.  Even now almost 25 years later he has horrible gut problems.  He also has NCGS and has an allergy to all dairy. His liver responded to Milk Thistle and Alpha Lipoic Acid along with a low carb, organic diet,  His liver enzymes have stayed down, but he is vigilant.

He was having horrible episodes of acid reflux, bloating and severe gas pain after a bout of food poisoning in 2019.  The gastro put him on antibiotics and Prilosec.  It cleared up fast, but then he had the side effects from the drugs.  Every time his gut acted up the gastro prescribed the same thing.  It was not curing the problem, just masking symptoms.  So, he saw a functional medicine doctor who  switched him to juicing cabbage, celery and apples daily..  Studies have shown it to be as effective as the drugs, but without the side effects..  It cures  ulcers in about the same amount of time, but gastritis takes longer.  He will do anything to avoid taking the PPI again and he has a really hard time with antibiotics.  Many classes of drugs are completely out due to his history and drug allergies.  The PPI shuts down acid production and when you resume a normal diet, the food does not properly digest and sits there and ferments making the rebound problem worse.  No such issues with the cabbage juice combo.  It balances the stomach acid allowing for digestion.  The change in his life is remarkable.  Instead of feeling horrible all the time, he feels better than he ever has and finally is able to enjoy life again. 

Edited February 20, 2023 by DebJ14
typo

[Scott Adams]

Allowing PPI's to be over the counter medicines in the USA is, in my opinion, a total disaster!

[Beverage]

I had a lot of acid reflux before and after my Celiac diagnosis. I apparently had a slight hiatal hernia, as in following the procedures in this article for heel thumping, I actually felt something slither down and suddenly a lot of my symptoms were greatly decreased.  I continue to do things in this article, and have had only minimal symptoms ever since, especially when I maintain the raised head of the bed, sip of apple cider vinegar before meals with protein (we need the acid to digest and not let the food rot), and heel thumping in the morning (or anytime it seems to be acting up).  Also, DGL tablets after a meal with anything acidic or spicy helps, sometimes before sleep, as laying down can sometimes brings it on.

https://drjockers.com/hiatal-hernia/