Still seeking diagnosis

[April42]

Hoping to find a “celiac expert” who may be able to help with a diagnosis. Finding doctors educated in celiac disease seems to be almost non existent in my experience! I’m fearful that both my daughters have celiac disease  & my 4mo granddaughter as well. My blood work only showed low iga levels & scope testing showed some gastritis & lymphocytes raised. However I think I’m carrying the latent type because my skin seems to be taking the hardest punch, along with bad migraines when I consume. From my understanding that type doesn’t show up in tests. Also my appetite was low & most likely wasn’t consuming enough gluten to test accurately in that fact. My gluten-free diet since spring has cleared my skin some , stopped a weird ice pick pain in my very lower back & caused me to STOP producing kidney stones consistently. Sometimes is hard to see improvements in what little digestive stuff I have going on & skin but I keep having accidental run ins with gluten. 
There’s a ton of distant relatives with celiac disease on my mom’s side of my family. There’s 5 & most likely my late grandmother who used to have epilepsy. She also used to have a red rash around her nose & it seemed itchy. Her seizures seem to flare & the doctors never knew the cause. From my understanding latent Celiac can cause seizures. When I was a baby I had breath holding spells. I’ve found that’s usually from anemia & of course anemia is a symptom of celiac disease. I’ve been anemic a few times in life, with both pregnancies. I have more memories of being sick as a child than not. Painful urination, bloated tummy, acid reflux,constipation,anxiety, adhd as a child . Many memories of breaking out in horrible itchy hives from snow, cold water & cold jogs as an adult. Dry skin, asthma, high bp, nausea, mouth peels occasionally, migraines. Acne rash  has progressively gotten worse over years. Looks identical to the DH rash online. Raised border, burns, sometimes itches, bleeds easy & slooow healing! I had a vaginal fibroid that caused a partial hysterectomy. My left ear occasionally hurts but not like a ear infection , now only does when I get glutened pretty sure. My gi doc took one look at me prior to testing with my symptoms & guessed Celiac. After scope testing was over he told me he didn’t see any signs of celiac & I never heard from office for a follow up. I took myself & daughter to a dermatologist to get a skin biopsy done to check for DH & he argued the fact of it being DH holding tight to saying it was just acne. I’m not sure he was aware DH can present as a raised blemish & was looking for flat hives?  My daughter also has this acne. She had horrific tummy problems as baby , we tried switching her formula. She had to have her very swollen tonsils & adenoids out as soon as she turned 3. Always outgrew her clothes early because of her bloated tummy. Constant ear infections & illnesses. Abnormal reactions to bug bites, weird skin rashes. A ER trip for staph a couple times & severe constipation to the point of passing blood. Reaction to sitting on hay & putting a flour mask on her face once. She’s dropped about 35lbs in a year, poor appetite, gets full too fast. Horrible anxiety, stress sweats, headaches. She went gluten-free for a few weeks back in summer & noticed skin clearing & felt a little better but wanted a dr diagnosis in order to be taken seriously as far as telling school cafeteria staff & such. Once she went back to eating for “tests accuracy” her symptoms got worse. Much worse. Vomiting, knee swelling, tiredness & now thyroid seems to be affected & tested abnormally (showed tpo antibody) hair thinning. 
My oldest daughter had to have her gallbladder taken out at 16, just because she was symptomatic for having a bad gallbladder but it tested only borderline abnormal in hidascan. Surgeon said there was a little inflammation behind it. Her symptoms never completely resolved . She’s also had issues with her thyroid, blood sugar. She had a small itchy spot on the back of her neck that would reappear when she was a young child. Dermatologist said could be autoimmune & to watch her around cold water for hives. Her new baby girl has been  having a few rashes & some slightly overactive digestive issues & is currently being breastfed.  I know from research that all these issues I’ve listed can be Celiac related . Currently waiting to get testing starting on my teen daughter. I feel we are all 3 walking billboards for celiac disease & it’s clearly the obvious but the diet is so life changing we want to be right. But if the latent type doesn’t show up in tests & so many local doctors here are clueless:/

 

 

 

[Scott Adams]

Certainly all of the symptoms you've described in you and your family could be associated with untreated celiac disease. In your case you've apparently had negative tests for it, yet many of your symptoms went away on a gluten-free diet. It's likely that at the least you have non-celiac gluten sensitivity, for which there are not current tests (around 10% of the population has this form), or celiac disease, because you went gluten-free before your blood tests, so your results could have been false negative.

At this point the only way to know for sure would be to do a gluten challenge and get retested, but the symptoms may be too difficult for you to go this route.

You should consider asking your relatives with symptoms to get a blood screening for it before they try a gluten-free diet.

[knitty kitty]

@April42,

If your total IgA was low, you would have a false negative on Celiac blood tests.  

Diabetes and anemia can cause false negatives on Celiac blood tests.

I'm Celiac, diabetic, anemic and I have DH.  I could not finish a gluten challenge, so I opted for genetic testing through my doctor.  I have two genes for Celiac.  

Have you been checked for nutritional deficiencies?  

[April42]

On 2/12/2023 at 4:58 PM, Scott Adams said:

Certainly all of the symptoms you've described in you and your family could be associated with untreated celiac disease. In your case you've apparently had negative tests for it, yet many of your symptoms went away on a gluten-free diet. It's likely that at the least you have non-celiac gluten sensitivity, for which there are not current tests (around 10% of the population has this form), or celiac disease, because you went gluten-free before your blood tests, so your results could have been false negative.

At this point the only way to know for sure would be to do a gluten challenge and get retested, but the symptoms may be too difficult for you to go this route.

You should consider asking your relatives with symptoms to get a blood screening for it before they try a gluten-free diet.

I feel like we have latent Celiac (I think it’s called that) The type that affects skin & neurological more than digestive. I think it doesn’t show up in test from where it doesn’t cause the antibody from digestion damage. I’m scared of any type of gluten challenge from where my grandmother had seizures & I get those terrible migraines when I eat it. My daughter’s dh & nausea spells have gotten worse the last couple weeks since shes increased consumption for testing. Thanks for your help!

[April42]

14 hours ago, knitty kitty said:

@April42,

If your total IgA was low, you would have a false negative on Celiac blood tests.  

Diabetes and anemia can cause false negatives on Celiac blood tests.

I'm Celiac, diabetic, anemic and I have DH.  I could not finish a gluten challenge, so I opted for genetic testing through my doctor.  I have two genes for Celiac.  

Have you been checked for nutritional deficiencies?  

It was low indeed! And I think we have the latent type of Celiac that doesn’t show up in testing. My daughter’s dh & nausea has gotten worse the last couple weeks from increased consumption:( Do you get the flat hive type of dh or the raised ones that are kinda like weird acne? 
And no , I need to but got frustrated/mad at my doctor & haven’t been back:/

[Yvonne Casey]

On 2/4/2023 at 12:33 AM, April42 said:

Hoping to find a “celiac expert” who may be able to help with a diagnosis. Finding doctors educated in celiac disease seems to be almost non existent in my experience! I’m fearful that both my daughters have celiac disease  & my 4mo granddaughter as well. My blood work only showed low iga levels & scope testing showed some gastritis & lymphocytes raised. However I think I’m carrying the latent type because my skin seems to be taking the hardest punch, along with bad migraines when I consume. From my understanding that type doesn’t show up in tests. Also my appetite was low & most likely wasn’t consuming enough gluten to test accurately in that fact. My gluten-free diet since spring has cleared my skin some , stopped a weird ice pick pain in my very lower back & caused me to STOP producing kidney stones consistently. Sometimes is hard to see improvements in what little digestive stuff I have going on & skin but I keep having accidental run ins with gluten. 
There’s a ton of distant relatives with celiac disease on my mom’s side of my family. There’s 5 & most likely my late grandmother who used to have epilepsy. She also used to have a red rash around her nose & it seemed itchy. Her seizures seem to flare & the doctors never knew the cause. From my understanding latent Celiac can cause seizures. When I was a baby I had breath holding spells. I’ve found that’s usually from anemia & of course anemia is a symptom of celiac disease. I’ve been anemic a few times in life, with both pregnancies. I have more memories of being sick as a child than not. Painful urination, bloated tummy, acid reflux,constipation,anxiety, adhd as a child . Many memories of breaking out in horrible itchy hives from snow, cold water & cold jogs as an adult. Dry skin, asthma, high bp, nausea, mouth peels occasionally, migraines. Acne rash  has progressively gotten worse over years. Looks identical to the DH rash online. Raised border, burns, sometimes itches, bleeds easy & slooow healing! I had a vaginal fibroid that caused a partial hysterectomy. My left ear occasionally hurts but not like a ear infection , now only does when I get glutened pretty sure. My gi doc took one look at me prior to testing with my symptoms & guessed Celiac. After scope testing was over he told me he didn’t see any signs of celiac & I never heard from office for a follow up. I took myself & daughter to a dermatologist to get a skin biopsy done to check for DH & he argued the fact of it being DH holding tight to saying it was just acne. I’m not sure he was aware DH can present as a raised blemish & was looking for flat hives?  My daughter also has this acne. She had horrific tummy problems as baby , we tried switching her formula. She had to have her very swollen tonsils & adenoids out as soon as she turned 3. Always outgrew her clothes early because of her bloated tummy. Constant ear infections & illnesses. Abnormal reactions to bug bites, weird skin rashes. A ER trip for staph a couple times & severe constipation to the point of passing blood. Reaction to sitting on hay & putting a flour mask on her face once. She’s dropped about 35lbs in a year, poor appetite, gets full too fast. Horrible anxiety, stress sweats, headaches. She went gluten-free for a few weeks back in summer & noticed skin clearing & felt a little better but wanted a dr diagnosis in order to be taken seriously as far as telling school cafeteria staff & such. Once she went back to eating for “tests accuracy” her symptoms got worse. Much worse. Vomiting, knee swelling, tiredness & now thyroid seems to be affected & tested abnormally (showed tpo antibody) hair thinning. 
My oldest daughter had to have her gallbladder taken out at 16, just because she was symptomatic for having a bad gallbladder but it tested only borderline abnormal in hidascan. Surgeon said there was a little inflammation behind it. Her symptoms never completely resolved . She’s also had issues with her thyroid, blood sugar. She had a small itchy spot on the back of her neck that would reappear when she was a young child. Dermatologist said could be autoimmune & to watch her around cold water for hives. Her new baby girl has been  having a few rashes & some slightly overactive digestive issues & is currently being breastfed.  I know from research that all these issues I’ve listed can be Celiac related . Currently waiting to get testing starting on my teen daughter. I feel we are all 3 walking billboards for celiac disease & it’s clearly the obvious but the diet is so life changing we want to be right. But if the latent type doesn’t show up in tests & so many local doctors here are clueless:/

 

 

 

It was years before I found a Gastroenterologist that finally diagnosed me with Celiac’s;  I suffered with diarrhea and vomiting, also had several patches of psoriasis…all blood work came back negative.  So this new gastroenterologist sat and listened and asked me many questions before coming up with a plan.  The first plan was an endoscopy, took a biopsy and guess what….Celiac’s!  I mentioned to him that other doctors only ran the blood test and said nothing, so they treated me for IBS, if you want to call telling me that I had IBS and sending me on my way as treatment.  When I finally learned how to shop and exactly what not to eat I can’t begin to tell you how much better I feel and the psoriasis is gone other than a tiny patch.  Good luck in finding a doctor that will listen and is determined to a remedy to your problems.

[April42]

On 2/14/2023 at 2:15 PM, Yvonne Casey said:

It was years before I found a Gastroenterologist that finally diagnosed me with Celiac’s;  I suffered with diarrhea and vomiting, also had several patches of psoriasis…all blood work came back negative.  So this new gastroenterologist sat and listened and asked me many questions before coming up with a plan.  The first plan was an endoscopy, took a biopsy and guess what….Celiac’s!  I mentioned to him that other doctors only ran the blood test and said nothing, so they treated me for IBS, if you want to call telling me that I had IBS and sending me on my way as treatment.  When I finally learned how to shop and exactly what not to eat I can’t begin to tell you how much better I feel and the psoriasis is gone other than a tiny patch.  Good luck in finding a doctor that will listen and is determined to a remedy to your problems.

I think i may have a little psoriasis too. Flared up after a recent run in. It’s shocking how undereducated our doctors are on the subject. I see why I takes years for a diagnosis. I know I have one, I just would like reassurance from an actual physician. Although I personally trust myself more  at this point, lol