Diagnosed with celiacs, but I'm worried it could be something else:

[lil rory]

Hi I'm an 18 year old female, I weigh around 85lbs and my height is around 5'1. (I know I'm tiny. It's definetly in my genetics, everyone in my family was very tiny until their 20's)

So, I've been sick the past 5 months. My doctor recently (about a week ago) diagnosed me with celiacs because my tTG IgA antibodies were elevated. A couple years ago I did the gluten-free diet, stayed gluten-free for about 13 months or so, and it didn't seem to relief my symptoms. Eventually it got so bad that I checked in to the ER, turns out my gallbladder was functioning at 5%. They removed my gallbladder and after recovering from surgery, I felt instantaneously better.

Now, a couple years later, they are wanting me to do the gluten-free diet again because of the elevated tTG IgA antibodies. I'm currently cleaning out my kitchen and shopping for gluten-free food. They want me to do the diet for 4 months to see if any of the symptoms I'm having right now go away. I'm just worried it's going to be a repeat from last time where I do the diet for a while, it doesn't relieve anything, then turns out it's something else.

I know the tTG IgA antibodies are commonly associated with celiacs but I heard they can they can be associated with other disorders too? Such as type 1 diabetes, liver disease, heart disease, thyroid disorder, and IBD. I don't know if maybe I should test for any of those? Especially since the gluten-free diet didn't relief my symptoms a couple years ago. Or maybe I have non-responsive celiacs disease? I'm not sure.

I know I have problems with blood sugar sometimes. For example I'll eat normally the day before but when I wake up the next morning I'm trembling and lightheaded, feeling like my blood sugar is very low, as if I haven't eaten in a week or so. There was an instance where I felt my blood sugar was really low, so I ate some cereal and honey, but a couple minutes later I threw it all up. I got tested for viruses and stuff but they all came back negative, so I didn't have anything external(?) (idk if that's the right word) that caused it.

Anyways, I don't know what I should do. The doctor is saying I have celiacs because of my tTG IgA antibodies, and they want me to do the gluten-free diet. But the gluten-free diet didn't seem to work in the past. Of course I am still willing to do it, but I'm not sure if, in the meantime, I should test for those other disorders that can cause elevated tTG IgA antibodies? Should I test for type 1 diabetes because of blood sugar problems I've had in the past? Type 1 diabetes also runs in my family, my uncle (on my mom's side) has it. I know I should talk to my doctor instead of going online, but my doctor doesn't listen to me or my ideas.

Reading this over, I realized I never really clarified my current symptoms I just said "I've been sick for the past 5 months". A short overview of my symptoms are: Dizziness (kind of like a no gravity sensation), Lightheadedness, Killer headaches, Fatigue (I sleep a lot), Sometimes I feel like I have low blood sugar (shaking, feeling faint, etc), Muscles spasms/sudden tension in neck and leg, and sometimes a pins and needles feeling in my feet or arms and legs. None of my symptoms get worse with eating, sometimes my lightheadedness gets a bit better but only when I feel like my blood sugar is low.

I've had people ask about endoscopies, I had one done in 2021 (after my gallbladder removal) I believe. They said there was some damage but that the damage was most likely done by GERD. They diagnosed me with GERD because I had trouble swallowing and I had indication of damage done in my esophagus as well. My other/recent doctor didn't mention doing another one since I had that one done a year or 2 ago, although the damage was associated with my GERD. Sorry if I didn't explain this very well, the time line gets a bit confusing haha.

That's everything I can remember off the top of my head. Any advice is appreciated! Thanks for reading!!

[trents]

Welcome to the forum, Lil rory!

Do you have the actual tTG-IGA score and the reference range used by the lab? Were any other antibody tests for celiac disease run besides the tTG-IGA? There are some foods, some medications and some diseases that can mimic celiac disease but this is not common.

Yes, you would do well to be checked for other autoimmune diseases, especially ones that run in the family. Autoimmune disorders tend to cluster and it is common to develop others over time if you have celiac disease.

Are you still consuming oats (even gluten free oats) and dairy? A high percentage of celiacs cannot tolerate dairy and about 10% cannot tolerate oats. Their proteins are similar enough to elicit a celiac-like reaction in the gut. And dairy also contains lactose which gives many people, especially celiacs, issues.

During the endoscopy you mentioned, are you certain they took samples of the duodenum and the duodenum bulb and sent them off to a lab for microscopic analysis? This is the area of the digestive track that is affected by celiac disease, not the stomach or esophagus.

Studies show that most people who claim to be eating gluten free are actually eating a lower gluten diet because they have cut out major sources of gluten but not minor ones and aren't aware of the myriad of places and ways gluten is hidden in the food supply and are not conscious of cross contamination ("CC"). For people who still eat out, this is particularly true. This might help:

From the symptoms you describe, I would encourage you to get checked for SIBO (Small Intestine Bacterial Overgrowth) and fructose intolerance. If you have celiac disease, you may also be suffering from vitamin and mineral deficiencies. Celiac disease damages the villi that line the small bowel and this is where all or nutrition is absorbed.

If your doctor doctor doesn't listen to you and is dismissive of your ideas, I would seek another physician.

Edited January 12, 2023 by trents

[knitty kitty]

@lil rory,

Welcome to the forum!  

I had to have my gallbladder removed in emergency surgery.  It didn't relieve all of my digestive symptoms either. 

As my symptoms worsened, I began researching.  (I'm a microbiologist.)  I found many of my symptoms were a result of malnutrition, Thiamine Vitamin B1 in particular.  

Thiamine deficiency can cause gallbladder dysfunction.  Thiamine deficiency can also cause ongoing gastrointestinal symptoms.  It's called gastrointestinal beriberi.  

I'll link an article describing a man whose drinking caused a thiamine deficiency.  But thiamine deficiency can be caused by malabsorption common in Celiac Disease.

I also have Type Two Diabetes.  Thiamine is very important in either type of diabetes because the pancreas uses lots of Thiamine to make insulin.  

In the mornings sometimes I have high blood glucose levels.  High glucose levels and low blood sugar levels have similar symptoms because in each case, glucose cannot get inside cells.    In low blood sugar levels, it's because there's not enough glucose in the blood and so none to get into cells.  In high blood sugar levels, it's because there's not enough insulin to help glucose get inside cells.  (Perhaps high blood sugar was why your body rejected more food.)

You should talk to your doctor about being tested for Diabetes.  You should also be checked for vitamin and mineral deficiencies commonly found in Celiac Disease.  It's part of proper follow up care for Celiacs.  If your doctor isn't listening to you, you can hire someone else. 

Ask for a referral to a dietician or a nutritionist or hire your own.

I found the Autoimmune Protocol Diet (AIP diet) most helpful.  It's been scientifically shown to reduce inflammation and promote healing.  The AIP diet was developed by a Celiac doctor, Dr. Sarah Ballantyne.  

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

Digestion and Vitamins information....

https://www.gallbladderattack.com/how-b-vitamins-aid-digestion/

Thiamine deficiency and the gallbladder....

https://www.hormonesmatter.com/tag/gallbladder-problems/

And...Gastrointestinal Beriberi...

Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

After following the AIP diet and correcting nutritional deficiencies, I'm doing much better.  

Go with Occam's Razor for now.  (The most obvious cause is probably right...ie..Celiac disease and malnutrition complications, especially in light of your tTg test that's Celiac specific.)

I hope this information is helpful in starting a conversation with your doctor and in helping you on your journey to healing.

Keep us posted on your progress!

[lil rory]

19 hours ago, trents said:

1: "Do you have the actual tTG-IGA score and the reference range used by the lab? Were any other antibody tests for celiac disease run besides the tTG-IGA? There are some foods, some medications and some diseases that can mimic celiac disease but this is not common."

2: "Are you still consuming oats (even gluten free oats) and dairy? A high percentage of celiacs cannot tolerate dairy and about 10% cannot tolerate oats. Their proteins are similar enough to elicit a celiac-like reaction in the gut. And dairy also contains lactose which gives many people, especially celiacs, issues."

3: "During the endoscopy you mentioned, are you certain they took samples of the duodenum and the duodenum bulb and sent them off to a lab for microscopic analysis? This is the area of the digestive track that is affected by celiac disease, not the stomach or esophagus."

4: "Studies show that most people who claim to be eating gluten free are actually eating a lower gluten diet because they have cut out major sources of gluten but not minor ones and aren't aware of the myriad of places and ways gluten is hidden in the food supply and are not conscious of cross contamination ("CC"). For people who still eat out, this is particularly true. This might help:"

5: "From the symptoms you describe, I would encourage you to get checked for SIBO (Small Intestine Bacterial Overgrowth) and fructose intolerance. If you have celiac disease, you may also be suffering from vitamin and mineral deficiencies. Celiac disease damages the villi that line the small bowel and this is where all or nutrition is absorbed."

1: I don't have the bloodwork paper on me, but my tTG-IgA was >250 I think. Since I've been sick for a while, they said that the high numbers could be from it being prolonged.

2: I don't really eat oats, so no I haven't cosumed any recently. As for dairy, I'm not lactose interolant but I have a lactose sensitivity. I'm able to handle foods with dairy or milk in them, like cheese and stuff like that, but just straight up milk is a bit much for me so I drink lactose free milk. 

3: I'm not sure. The endoscopy was long ago, so I don't remember the specifics I'm sorry!

4: I just started the gluten-free diet, but so far I've been really careful. I read labels on everything even stuff that has gluten free on it (just to make sure), and I even bought all new dishware ro avoid cross contamination. I did the same thing when I did the diet a couple years ago (did the diet for about 13 months, but didn't have any relief in symptoms). 

5: I've done multiple labs checking for vitamin/mineral deficencies/malabsorbtion the whole fun pannel haha. I came back cyrstal clear on everything, so I'm doing great on that end.

 

Hopefully I answered everything! Thank you for the response.

[lil rory]

15 hours ago, knitty kitty said:

@lil rory,

1: "I had to have my gallbladder removed in emergency surgery.  It didn't relieve all of my digestive symptoms either." 

2: "As my symptoms worsened, I began researching.  (I'm a microbiologist.)  I found many of my symptoms were a result of malnutrition, Thiamine Vitamin B1 in particular.  

Thiamine deficiency can cause gallbladder dysfunction.  Thiamine deficiency can also cause ongoing gastrointestinal symptoms.  It's called gastrointestinal beriberi.  

I'll link an article describing a man whose drinking caused a thiamine deficiency.  But thiamine deficiency can be caused by malabsorption common in Celiac Disease."

3: "I also have Type Two Diabetes.  Thiamine is very important in either type of diabetes because the pancreas uses lots of Thiamine to make insulin.  

In the mornings sometimes I have high blood glucose levels.  High glucose levels and low blood sugar levels have similar symptoms because in each case, glucose cannot get inside cells.    In low blood sugar levels, it's because there's not enough glucose in the blood and so none to get into cells.  In high blood sugar levels, it's because there's not enough insulin to help glucose get inside cells.  (Perhaps high blood sugar was why your body rejected more food.)"

4: "You should talk to your doctor about being tested for Diabetes.  You should also be checked for vitamin and mineral deficiencies commonly found in Celiac Disease.  It's part of proper follow up care for Celiacs."

5: "If your doctor isn't listening to you, you can hire someone else."

6: "I hope this information is helpful in starting a conversation with your doctor and in helping you on your journey to healing.

Keep us posted on your progress!"

1: Glad to know another sans-gallbladder haha!

2: I've done multiple labs checking for vitamin/mineral deficencies/malabsorbtion the whole fun pannel haha. I came back cyrstal clear on everything, so I'm doing great on that end. Althought, I will have to get my bloodwork papers to check specifally for Thiamine Vitamin B1. I think I tested for Vitamin B (would have to double check) and it came back clear, but I don't know about Thiamine B1. 

3: "(Perhaps high blood sugar was why your body rejected more food.)" Yeah that would make sense! I have an uncle with Type 1 Diabetes and I can ask him if he has something similar happen to him. 

4: Yeah I might invest in a blood glucose tester (I don't know if that might be helpful), and talk to a doctor about my results from it. I've seen some from CVS that say they can store hundreds of results, so maybe we can see if there's an off pattern or adnormal levels? I know I'm repeating from #2, but I have had many vitamin and mineral deficiencies panels done and they've all come back clear. But I will double check for Thiamine B1.

5: My biggest struggle is finding a good doctor, I've gone to so many doctors the past couple months. I've been to my pediatrician (I'm still in high school so I still have to have one haha) neurologist, ENTs, rheumatologists and gastroenterologists. I've even been to a physical therapist. Out of everyone my physical therapist is the only one who listens and talks to me, and isn't dismissive of my ideas. Hopefully I will find someone.

6: Thank you for the response! And I will do my best to remember to post my progress on here! Hopefully I answered everything.

[DawnBT]

On 1/12/2023 at 12:21 AM, lil rory said:

Hi I'm an 18 year old female, I weigh around 85lbs and my height is around 5'1. (I know I'm tiny. It's definetly in my genetics, everyone in my family was very tiny until their 20's)

So, I've been sick the past 5 months. My doctor recently (about a week ago) diagnosed me with celiacs because my tTG IgA antibodies were elevated. A couple years ago I did the gluten-free diet, stayed gluten-free for about 13 months or so, and it didn't seem to relief my symptoms. Eventually it got so bad that I checked in to the ER, turns out my gallbladder was functioning at 5%. They removed my gallbladder and after recovering from surgery, I felt instantaneously better.

Now, a couple years later, they are wanting me to do the gluten-free diet again because of the elevated tTG IgA antibodies. I'm currently cleaning out my kitchen and shopping for gluten-free food. They want me to do the diet for 4 months to see if any of the symptoms I'm having right now go away. I'm just worried it's going to be a repeat from last time where I do the diet for a while, it doesn't relieve anything, then turns out it's something else.

I know the tTG IgA antibodies are commonly associated with celiacs but I heard they can they can be associated with other disorders too? Such as type 1 diabetes, liver disease, heart disease, thyroid disorder, and IBD. I don't know if maybe I should test for any of those? Especially since the gluten-free diet didn't relief my symptoms a couple years ago. Or maybe I have non-responsive celiacs disease? I'm not sure.

I know I have problems with blood sugar sometimes. For example I'll eat normally the day before but when I wake up the next morning I'm trembling and lightheaded, feeling like my blood sugar is very low, as if I haven't eaten in a week or so. There was an instance where I felt my blood sugar was really low, so I ate some cereal and honey, but a couple minutes later I threw it all up. I got tested for viruses and stuff but they all came back negative, so I didn't have anything external(?) (idk if that's the right word) that caused it.

Anyways, I don't know what I should do. The doctor is saying I have celiacs because of my tTG IgA antibodies, and they want me to do the gluten-free diet. But the gluten-free diet didn't seem to work in the past. Of course I am still willing to do it, but I'm not sure if, in the meantime, I should test for those other disorders that can cause elevated tTG IgA antibodies? Should I test for type 1 diabetes because of blood sugar problems I've had in the past? Type 1 diabetes also runs in my family, my uncle (on my mom's side) has it. I know I should talk to my doctor instead of going online, but my doctor doesn't listen to me or my ideas.

Reading this over, I realized I never really clarified my current symptoms I just said "I've been sick for the past 5 months". A short overview of my symptoms are: Dizziness (kind of like a no gravity sensation), Lightheadedness, Killer headaches, Fatigue (I sleep a lot), Sometimes I feel like I have low blood sugar (shaking, feeling faint, etc), Muscles spasms/sudden tension in neck and leg, and sometimes a pins and needles feeling in my feet or arms and legs. None of my symptoms get worse with eating, sometimes my lightheadedness gets a bit better but only when I feel like my blood sugar is low.

I've had people ask about endoscopies, I had one done in 2021 (after my gallbladder removal) I believe. They said there was some damage but that the damage was most likely done by GERD. They diagnosed me with GERD because I had trouble swallowing and I had indication of damage done in my esophagus as well. My other/recent doctor didn't mention doing another one since I had that one done a year or 2 ago, although the damage was associated with my GERD. Sorry if I didn't explain this very well, the time line gets a bit confusing haha.

That's everything I can remember off the top of my head. Any advice is appreciated! Thanks for reading!!

Hello, 

I read your story because it seems familiar to me. I am newly diagnosed celiac - 4-5 months now and had some of the same questions.  Where going gluten free helped with my bloating and some abdominal pain, it did not help other intestinal issues. Come to find out, by my GI nurse, she said dairy intolerance is common with celiac disease. That was interesting (and devastating)to me because I am a lacto ovo vegetarian (since 1997) and eat lots of cheese, butter, sour cream etc.  To my surprise she did say there was OTC supplements that one could take if eating dairy to help your body process the lactose. I had no idea with this all being new to me. I started doing that and it actually helped some! But not all the time. I also get that weird lightheadedness you talk about, which is happening more often. Mornings and afternoons sometimes and it is always AFTER eating. I just read that there are many other celiac peeps that have the same issue. I also was diagnosed with GERD as I had lower esophagus ulcers found with my endoscopy. My doctor recommended famotidne as needed. Does it help? I don’t know. Sometimes I think yes and other times I think no. The more I read the more complicated it gets.  Sometimes I wonder why am I doing all this, if I still feel crappish sometimes. But I am still learning and I keep a log. It gets right down frustrating sometimes, so I am glad I found this website with people who just know! I feel less lonely and it gives me hope. Thank you for your story and hope you can also get feeling better! 
 

Dawn

[trents]

Dawn,

Lactose is not the only potential problem with dairy for celiacs. Some celaics are also intolerant of the main protein in dairy (casein) which mimics a gluten reaction for them. Also, about 10% of celiacs cannot tolerate the protein found in oats (avenin).

[DawnBT]

1 hour ago, trents said:

Dawn,

Lactose is not the only potential problem with dairy for celiacs. Some celaics are also intolerant of the main protein in dairy (casein) which mimics a gluten reaction for them. Also, about 10% of celiacs cannot tolerate the protein found in oats (avenin).

Interesting. Thank you for that knowledge. 

[Wheatwacked]

The important aspect of Celiac Disease is the malaborbtion. Even after starting GFD you need to address the low vitamin status. Low Choline intake can cause gall bladder problems, neuro problems. Vitamin B1 can cause all sorts of problems from fatigue to neurapathy and beyond. vitamin D is classically low and can cause depression, bone loss, other autoimmune disease are also likely. These are things few doctors are even aware of.

As a starter double your vitamin D intake, target is 80 ng/ml blood plasma for optimum anti autoimmune and mood effects, Choline (beef liver, eggs, lean steak) intake is low in the western diet and add in Celiac malabsorbtion it's almost a guarantee, potassium world wide low intake concern.  Iodine: muscle tone, anti cancer, low thyroid. In the US iodine intake has gone down to half the average intake since 1970. Cancer has doubled. Coincidence or cause and effect? No one will say. All the B vitamins participate in energy production and while the minimum RDA is rediculously low, exept for synthical folic acid, there is no danger in very high intakes. Folate from food has no limit, folic acid upper safe limit is 1000 mg. B3 Nicotinic Acid causes flushing around 100 mg but that passes in a few days and is not a health hazard but can be uncomfortalbe. Other forms of B3 do not cause the flush but also don't seem to work as well. The flush is your capillaries expanding and allowing better blood flow through the tissues.