This Roller Coaster Ride Needs to Stop

[Ginger38]

I have posted a lot on here and find that the support , advice and information here is much more helpful than anything else.. ever. I am really tired of the back and forth advice in the medical community and I am beyond frustrated and over all of it currently. I will try to keep this as brief as possible.

I have positive TTG IGA antibodies - and I have had these every time I have been tested. The first time they were positive I was told I did not have celiac and couldn't have celiac but I was gluten intolerant and to go gluten free. I did this for about 3-4 months, dedicated I might add, and I did feel better. However, my blood glucose went up drastically and since I was already pre-diabetic and insulin resistant already, I was then told to stop the gluten free diet and resume eating gluten as it would be better for my diabetes.I have been on a yo yo diet and roller coaster since between the gluten free and not gluten free.

I decided to see a gastro doc and after him promising me I had celiac based on all my symptoms and positive antibodies but we needed that actual diagnosis in order to be treated correctly, and we just needed the EGD with biopsies to have that diagnosis, I reluctantly agreed to go fully on the gluten challenge for 8 weeks prior to having an EGD and colonoscopy, both with biopsies . The gluten challenge was miserable. At first I was horribly constipated, I gained 9 pounds during the challenge, had horrible swelling issues, terrible bloating, looked and felt pregnant, had rashes and itching, couldn't stay awake, had extreme brain fog, exhaustion, speech difficulties, palpitations, tachycardia , menstrual issues, had an insatiable hunger, mood swings, just all the things. All of this to get the tests and biopsies done and they looked "okay" .. so even though I was told to live like a celiac all of the sudden I am no longer at risk.. I am just gluten intolerant. 

I also have uncontrolled diabetes that they feel is made worse by the gluten free diet, so again after all these tests, but having all the symptoms and still having positive antibodies I feel like I am stuck with the choice in regards to my health of addressing the diabetes or the celiac (still don't believe I am not actually Celiac). 

So I have been having gluten off and on to try and manage my diabetes, even though most recently, because I have been so physically sick again (that can't be good for diabetes either right??)  with stomach pain, burning, diarrhea, stools that are yellow in color and contain mucus, nausea, some vomiting, sour stomach, I was told I need to just eat gluten free so my stomach will improve, and we will just put you on insulin - I don't want to go on insulin yet, and especially if I do not actually have to. I don't understand why I am backed in this corner of feeling like I have to choose to eat for my diabetes or my stomach, but not both, but I am over it.  

So currently in regards to GI symptoms - I consistently have nausea, vomiting, diarrhea, abdominal pain, gas , bloating, reflux, sour stomach, yellow stools with mucus. 

I am also exhausted and have been itching. I have been having increased swelling, pain, and horrible numbness and tingling, especially in my hands. I am also having an increase in relentless nightmares and night terrors. I have also been having chest pain and palpitations and tachycardia. I have even tried taking digestive enzymes to help break down gluten - (specifically the Gliadin X) and they just seem to make me feel worse.

I have trouble with digestion of things like salads, beans, broccoli, etc. on a good day, and that is even worse when I have gluten on any kind of semi-regular basis.  

I just can't keep doing this. Mentally, physically and emotionally I am just DONE. I already have a lot of stress in my life.. I am a single mom to a daughter who has her own health issues and is somewhat special needs. I need to be 100% to be what she needs from me, especially with all the running back and forth we have been doing to the doctors and hospitals.

So I am no doctor... but I just don't think they are right about any of this. I truly feel I am celiac.. and either the damage just wasn't bad yet, or they just missed the area that has damage, or its all a precursor to full blown celiac (kind of like pre-diabetes/insulin resistance is for actual diabetes).

I don't want to live miserable and feel bad all the time. I also don't want my diabetes to be so out of control I have major complications, and I don't feel like insulin is a great option if not truly needed. At this point, if I ever feel like I have a somewhat clear path of what I am dealing with,  I feel like I am looking at MONTHS to YEARS of trying to heal my body. Please help!

[Scott Adams]

Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage.

Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone.

You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.

[Ginger38]

2 hours ago, Scott Adams said:

Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage.

Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone.

You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.

Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits.

I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad. 

Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄

My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 

[Scott Adams]

Given your severe symptoms it sounds like you would be much better off going 100% gluten-free!

[knitty kitty]

@Ginger38,

 I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!  

I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.  

I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.  

I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did not want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine.

I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal. 

Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet. 

You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!

Edited July 18 by knitty kitty
Typo correction

[Ginger38]

On 7/18/2025 at 3:54 AM, knitty kitty said:

@Ginger38,

 I've been there with horrible symptoms and diarrhea accidents and diabetes and the insulin conundrum!  My doctors were just as frustrating!  

I had nutritional deficiencies.  I know your doctors refuse to test for this.  So did mine, saying "I can't make money prescribing vitamins."  Some members say a naturopathic doctor is more open to testing for deficiencies.  Remember not to start supplementing until after testing is done.  Otherwise the supplements will raise your blood levels falsely.  

I had studied Nutrition at university, so I decided to supplement essential vitamins and minerals.  A B Complex, extra Thiamine (Benfotiamine) for the diabetes, magnesium and Vitamin D are the supplements I started with.   The B vitamins are water soluble so any excess is excreted easily.  Thiamine even in high doses is safe and nontoxic.  Diabetics lose more thiamine in urine because of weird kidney stuff.  

I wanted to get my blood glucose levels under control because gluten free foods made my level spike for long periods, too.  I absolutely did not want to go on insulin.  Once you do, the pancreas stops making it.  Very scary.  Best to help the pancreas function with thiamine in the form Benfotiamine.

I began the low histamine version of the Autoimmune Protocol Diet (developed by Dr. Sarah Ballantyne, A Celiac herself).  It's a low carb, very strict diet at first, then expanded.  I considered it similar to feeding a sick baby.  You don't give hard to digest foods to a baby.  You give easily digestible foods.  This allows time for the gastrointestinal tract to calm down and heal. 

Symptoms started to calm down quickly.  With the vitamins, I started feeling much better.  My blood glucose levels stabilized.  I did not go on insulin.  I do not take anti-glycemic pharmaceutical drugs like Metformin.  Just diet. 

You're making the right decision to live as a Celiac.  Your body is telling you clearly.  You can get through this.  You're strong and you're fighting for yourself and your baby.  Good job!  You have the Tribe behind you!

Thank you ! Good to know I am not alone. I am currently on metformin and rybelsus for my diabetes. The last week or so my sugar has been so uncontrolled, more so than before. I am very frustrated and discouraged by all this. I have had days of 317 to a low of 64. I feel terrible. I am getting back on the gluten free wagon, just taking some time, and not seeing results and relief as fast as I had hoped. My stomach is just a mess, sometimes worse than others

[knitty kitty]

@Ginger38,

I'm with you!  

I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.  

Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!  

I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication.

Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!

[Beverage]

I strongly agree with others about processed gluten free foods, like breads and pasta, being bad for us. Read the labels, full of this starch and that starch, seed oils that are inflammatory, etc. Before you were celiac, you probably wouldn't even touch something with those ingredients. I do much better with whole foods, meat, veggies, a little fruit. I made 90% myself, make extra and freeze it for future meals. Cutting out processed gluten free food and eating mostly real whole food helped me feel much better. And definitely benfotiamine!