Desperately seeking help with biopsy results. Afraid I’ve passed the gene to both of my daughters:(

[April42]

I have a seemingly endless list of celiac type of symptoms. My iga level is down. I believe my doc is having trouble seeing Celiac clearly because of my diet being low in & no gluten during the series of testing. Not to sound rude but don’t have a lot of faith in my doc based on comments he’s made towards the subject (not sure how educated he is on celiac disease”. This diagnosis is so important to me so that my daughters will take the diet serious, as they are both very symptomatic as well! Any & all help appreciated...it’s been a long road as I think I’ve had ( & my girls!!) this debilitating disease since childhood:(

[trents]

1. Yes, you do need to get a new doctor.

2. Yes, you would need to begin a gluten challenge before being retested if you want a definite diagnosis.

3. While your daughters are still consuming gluten, they should be tested. You can also purchase home celiac test kits from companies like imaware for around $100 US.

4. You may have celiac disease but you could also have NCGS (Non Celiac Gluten Sensitivity) which carries many of the same symptoms but for which there is no testing. It doesn't damage the villi of the bowel or produce antibodies. Celiac disease must first be ruled out.

[Wheatwacked]

the point of the gluten challange is to eat enough gluten to make you sick enough so the tests will show that you are sick.  If you are successfully navigating our gluten flush world, yes you will not "pass" the test.  In my opinion Celiac Disease is not so much a disease, like Covid or measles, but more of a poisoning.  

Doctors don't learn very much about nutrition. Some people, doctors included, can be jerks. Here is a list of 300 symptoms that gluten can cause. Share it with your daughters. 300 Facts You Didn’t Know About Celiac Disease!  I don't doubt you've had symptoms all of your life, but told it is normal. I know I was.

Lots of money is spent to convince us that wheat is essential to our health and the health of the world economy.

Edited July 17, 2022 by Wheatwacked

[April42]

17 hours ago, trents said:

1. Yes, you do need to get a new doctor.

2. Yes, you would need to begin a gluten challenge before being retested if you want a definite diagnosis.

3. While your daughters are still consuming gluten, they should be tested. You can also purchase home celiac test kits from companies like imaware for around $100 US.

4. You may have celiac disease but you could also have NCGS (Non Celiac Gluten Sensitivity) which carries many of the same symptoms but for which there is no testing. It doesn't damage the villi of the bowel or produce antibodies. Celiac disease must first be ruled out.

Yes, as soon as my husband mentioned that the doc told him after my colonoscopy  “ you can never completely eliminate gluten from your diet “ I lost a little faith in him. I’ll look into the home kits as my oldest daughter is still eating it, fearlessly. Thanks for the helpful info!

 

17 hours ago, Wheatwacked said:

the point of the gluten challange is to eat enough gluten to make you sick enough so the tests will show that you are sick.  If you are successfully navigating our gluten flush world, yes you will not "pass" the test.  In my opinion Celiac Disease is not so much a disease, like Covid or measles, but more of a poisoning.  

Doctors don't learn very much about nutrition. Some people, doctors included, can be jerks. Here is a list of 300 symptoms that gluten can cause. Share it with your daughters. 300 Facts You Didn’t Know About Celiac Disease!  I don't doubt you've had symptoms all of your life, but told it is normal. I know I was.

Lots of money is spent to convince us that wheat is essential to our health and the health of the world economy.

I’m afraid of the gluten challenge because of how my grandmother who passed away years ago used to have “mysterious epilepsy” & celiac disease is was/so strong on her side. I got a 3 day migraine from dabbling in gluten on Father’s Day weekend. Then wanted to try eating/cheating on diet a little with a “favorite cookie “ last weekend with an activated charcoal tablet to hopefully absorb the gluten...but just like you stated, I felt like I was “poisoning” myself & couldn’t enjoy the taste. Took only  3 bites & had 4 itchy blisters on arms & torso the next day:/

[April42]

Just now, April42 said:

Yes, as soon as my husband mentioned that the doc told him after my colonoscopy  “ you can never completely eliminate gluten from your diet “ I lost a little faith in him. I’ll look into the home kits as my oldest daughter is still eating it, fearlessly. Thanks for the helpful info!

 

I

 

I’m afraid of the gluten challenge because of how my grandmother who passed away years ago used to have “mysterious epilepsy” & celiac disease is was/so strong on her side. I got a 3 day migraine from dabbling in gluten on Father’s Day weekend. Then wanted to try eating/cheating on diet a little with a “favorite cookie “ last weekend with an activated charcoal tablet to hopefully absorb the gluten...but just like you stated, I felt like I was “poisoning” myself & couldn’t enjoy the taste. Took only  3 bites & had 4 itchy blisters on arms & torso the next day:/

& thanks for the link! I’ve had anxiety, adhd, depression, migraines, high bp, kidney stones, asthma, weird acne, dry spots on scalp, vaginal fibroids, dental issues, numb toes, cold sensitivity, can’t gain weight, no appetite, little sense and taste & smell. All symptoms have gotten worse over my life after stressful events, Covid... I could go on & on with classic symptoms:(

[trents]

Wait! Your doctor didn't do a colonoscopy to check for celiac disease did he? That can't be uses to diagnose celiac disease. The scoping for that is a upper GI (endoscopy) with a biopsy of the small bowel lining.

[April42]

12 hours ago, April42 said:

I have a seemingly endless list of celiac type of symptoms. My iga level is down. I believe my doc is having trouble seeing Celiac clearly because of my diet being low in & no gluten during the series of testing. Not to sound rude but don’t have a lot of faith in my doc based on comments he’s made towards the subject (not sure how educated he is on celiac disease”. This diagnosis is so important to me so that my daughters will take the diet serious, as they are both very symptomatic as well! Any & all help appreciated...it’s been a long road as I think I’ve had ( & my girls!!) this debilitating disease since childhood:(

 

5 minutes ago, trents said:

Wait! Your doctor didn't do a colonoscopy to check for celiac disease did he? That can't be uses to diagnose celiac disease. The scoping for that is a upper GI (endoscopy) with a biopsy of the small bowel lining.

Yes he did! I’m sorry I haven’t explained very thoroughly on here because I couldn’t post my results like I could on Reddit but my biopsy showed “preserved villous architecture & increased lymphocytes & mild gastritis! 

[Wheatwacked]

To compare symptoms and what I think worked for me:

• Anxiety, adhd, depression - increase vitamin D blood level to 80 ng/ml; take 5 mg of Lithium Orotate a day.
• migranes - I've been lucky I guess. Never had.
• High BP - Increase potassium intake to DV of 4700 mg a day. That way even with the built in high sodium in the American diet you get a potassium/sodium ratio of 2:1, recognized by the WHO and most countries as the optimum for BP. The DASH diet does it, but by focusing on reducing sodium. I read that our ancient ancestors ate about 7 potassium to 1 salt. BP meds dehydrated me but did not reduce my BP. Some "potassium saving" meds can cause Hyperkalimia.
• Kidney stones - lucky again. When I was 12 I had blood in urine requiring a cystoscopy. No problem found.
• Dry spots on scalp - had dandruff rom at least high school until GFD.
• Kidney stones - when I was 12 I had blood in urine that required a cystoscopy but no problem found. 
• Asthma - never had, but could never breath through my nose until I started GFD and always have clicking, popping ears. Chewing gum does not help.
• Wierd acne - Myself, mom, two brothers and son get sebacious cystic acne. None new since GFD
• Vaginal fibroids - I am a guy, but was diagnosed with Benign Prostate Hypertrophy (old man disease) at 21. Resolved with GFD at 63.
• Dental issues - lucky me, almost no caries since Floridation started in the sixties. Instead of abrasive toothpaste I rinse with tartar control mouthwash to soften the tartar, then brush with cheap electic spin brush. 
• Numb toes - long story, always had cold sweaty feet, now they are dry and twitchy.  Current issues still improving but it wakes me every two hours or so. Hot shower and Alka Seltzer.
• Cold Sensitivity - I used to turn the heat on at 78 degrees. Long hot shower was the only thing that helped once I got cold.
• Can't gain weight. no appitite - skinny is better. I would put off eating because after eating I had less energy.
• Little sense and taste & smell - I rarely had a problem with smelly stuff that bothered my friends unless they told me about it. Advantage to mouthbreather.

Edited July 17, 2022 by Wheatwacked
typo

[April42]

18 hours ago, April42 said:

I have a seemingly endless list of celiac type of symptoms. My iga level is down. I believe my doc is having trouble seeing Celiac clearly because of my diet being low in & no gluten during the series of testing. Not to sound rude but don’t have a lot of faith in my doc based on comments he’s made towards the subject (not sure how educated he is on celiac disease”. This diagnosis is so important to me so that my daughters will take the diet serious, as they are both very symptomatic as well! Any & all help appreciated...it’s been a long road as I think I’ve had ( & my girls!!) this debilitating disease since childhood:(

My biopsy showed “preserved villous architecture & increased lymphocytes & mild gastritis.

I feel the damage isn’t so prominent because I haven consumed a lot of food period over the last year & have always naturally been a light bread eater. On top of that I have an usually high tolerance to cannabis &  I medicate with it daily (high dose) A plant known for it’s amazing healing abilities...

[trents]

12 minutes ago, April42 said:

 

Yes he did! I’m sorry I haven’t explained very thoroughly on here because I couldn’t post my results like I could on Reddit but my biopsy showed “preserved villous architecture & increased lymphocytes & mild gastritis! 

You can post your results on this forum. You can attach pictures or just type the results in manually. To attach pictures, go the the three dots in the upper right corner of the post window area and click on edit. You only have a short time to edit a post so after that time window, include the pic in a new post.

Edited July 17, 2022 by trents

[April42]

2 hours ago, Wheatwacked said:

To compare symptoms and what I think worked for me:

• Anxiety, adhd, depression - increase vitamin D blood level to 80 ng/ml; take 5 mg of Lithium Orotate a day.
• migranes - I've been lucky I guess. Never had.
• High BP - Increase potassium intake to DV of 4700 mg a day. That way even with the built in high sodium in the American diet you get a potassium/sodium ratio of 2:1, recognized by the WHO and most countries as the optimum for BP. The DASH diet does it, but by focusing on reducing sodium. I read that our ancient ancestors ate about 7 potassium to 1 salt. BP meds dehydrated me but did not reduce my BP. Some "potassium saving" meds can cause Hyperkalimia.
• Kidney stones - lucky again. When I was 12 I had blood in urine requiring a cystoscopy. No problem found.
• Dry spots on scalp - had dandruff rom at least high school until GFD.
• Kidney stones - when I was 12 I had blood in urine that required a cystoscopy but no problem found. 
• Asthma - never had, but could never breath through my nose until I started GFD and always have clicking, popping ears. Chewing gum does not help.
• Wierd acne - mom, two brothers and son get sebacious cystic acne.
• Vaginal fibroids - I am a guy, but was diagnosed with Benign Prostate Hypertrophy (old man disease) at 21. Resolved with GFD at 63.
• Dental issues - lucky me, almost no caries since Floridation started in the sixties. Instead of abrasive toothpaste I rinse with tartar control mouthwash to soften the tartar, then brush with cheap electic spin brush. 
• Numb toes - long story, always had cold sweaty feet, Current issues still improving but it wakes me every two hours or so. Hot shower and Alka Seltzer.
• Cold Sensitivity - I used to turn the heat on at 78 degrees. Long hot shower was the only thing that helped once I got cold.
• Can't gain weight. no appitite - skinny is better. I would put off eating because after eating I felt worse.
• Little sense and taste & smell - I rarely had a problem with smelly stuff that bothered my friends unless they told me about it. Advantage to mouthbreather.

Thanks for the supplemental tips! My left ear hurts sometimes. But just briefly & doesn’t feel like a regular ear infection ache. Comes & goes...has almost disappeared since gluten-free but I keep having run ins with stupid gluten & so can’t tell if it’s related. My nose used to always itch & that has calmed down. I sometimes get a small red dotty rash around my eyes & redness around my nose. Rosacea & peri/something dermatitis, all related to celiac disease. I’ve had several cavities despite brushing good (however not the best flosser to be fair). But my mouth peels/sheds a little sometimes after brushing in the morning which I read can be celiac related but my gi doc said may be toothpaste sensitivity. I also have some gum recession too, another celiac symp. I’m always cold too, I feel your pain!

[April42]

2 hours ago, trents said:

You can post your results on this forum. You can attach pictures or just type the results in manually. To attach pictures, go the the three dots in the upper right corner of the post window area and click on edit. You only have a short time to edit a post so after that time window, include the pic in a new post.

Ohhh ok thanks!

[Kate333]

2 hours ago, April42 said:

 

Yes he did! I’m sorry I haven’t explained very thoroughly on here because I couldn’t post my results like I could on Reddit but my biopsy showed “preserved villous architecture & increased lymphocytes & mild gastritis! 

Without seeing the exact biopsy report, my comment is pure speculation.  That said. from your description, it sounds like your gut damage is thankfully relatively minimal and you should heal quickly if you adopt a STRICT gluten-free diet.  So that is a good thing! If the report said severe or extensive villous blunting etc., you would have reason to be stressed.  But even the most damaged guts can heal but usually takes longer.   

[April42]

15 hours ago, April42 said:

I have a seemingly endless list of celiac type of symptoms. My iga level is down. I believe my doc is having trouble seeing Celiac clearly because of my diet being low in & no gluten during the series of testing. Not to sound rude but don’t have a lot of faith in my doc based on comments he’s made towards the subject (not sure how educated he is on celiac disease”. This diagnosis is so important to me so that my daughters will take the diet serious, as they are both very symptomatic as well! Any & all help appreciated...it’s been a long road as I think I’ve had ( & my girls!!) this debilitating disease since childhood:(

 

[Wheatwacked]

The mouth sores and swollen gums could be scurvy, vitamin C deficiency. The upper limit is set at 2000 mg a day, but Dr Linus Pauling, essentially the father of vitamin C, was taking 8000 mg a day when he died at 93. He recommended 2000 mg a day minimum. Eight ounces of peeled naval orange will cover for the minimum RDA of 125 mg needed to prevent scurvy. 

[Wheatwacked]

My wife Kathy had from childhood allergies, asthma, rosacia multiple miscarriages, endometriosis and died after three rounds of ineffective chemotherapy for ovarian cancer back in 2005. She was never diagnosed but Dr Fine's theory that moms antibodies triggered my son's Celiac so when he was weaned and introduced to wheat he immediately reacted. Six months of Nutramigen healed him and he grew up to be a First responder/Lifeguard (ADHD people tend to like this kind of job), but we stayed in denial.

[April42]

4 hours ago, Kate333 said:

Without seeing the exact biopsy report, my comment is pure speculation.  That said. from your description, it sounds like your gut damage is thankfully relatively minimal and you should heal quickly if you adopt a STRICT gluten-free diet.  So that is a good thing! If the report said severe or extensive villous blunting etc., you would have reason to be stressed.  But even the most damaged guts can heal but usually takes longer.   

Yes I was so thankful for minimal damage! I tried to post my results on here, but not sure if they uploaded right. Gluten free is so hard & requires being aware of everything single thing that goes in ones mouth. I just need a little more proof I have it before my girls will consider the diet & take it completely serious too:/

[April42]

50 minutes ago, Wheatwacked said:

My wife Kathy had from childhood allergies, asthma, rosacia multiple miscarriages, endometriosis and died after three rounds of ineffective chemotherapy for ovarian cancer back in 2005. She was never diagnosed but Dr Fine's theory that moms antibodies triggered my son's Celiac so when he was weaned and introduced to wheat he immediately reacted. Six months of Nutramigen healed him and he grew up to be a First responder/Lifeguard (ADHD people tend to like this kind of job), but we stayed in denial.

I’m so sorry about your wife’s passing:(  Both my girls had horrible digestive issues as babies too. My youngest reminded me recently of how she reacted to a “flour beauty mask” she made when she was younger for a phone video, turned her face bright red. And how she used to get an itchy throat from tasting flour straight out of the canister at her grandmothers! My oldest became a life guard too , I didn’t know that but makes sense!

[yuluyouyue]

On 7/17/2022 at 3:46 AM, April42 said:

I have a seemingly endless list of celiac type of symptoms. My iga level is down. I believe my doc is having trouble seeing Celiac clearly because of my diet being low in & no gluten during the series of testing. Not to sound rude but don’t have a lot of faith in my doc based on comments he’s made towards the subject (not sure how educated he is on celiac disease”. This diagnosis is so important to me so that my daughters will take the diet serious, as they are both very symptomatic as well! Any & all help appreciated...it’s been a long road as I think I’ve had ( & my girls!!) this debilitating disease since childhood:(

Hello, shouldn't your daughters get tested too? 

[April42]

16 hours ago, yuluyouyue said:

Hello, shouldn't your daughters get tested too? 

My oldest had her gallbladder taken out in order to try to alleviate digestive issues in her teens. Taken out based on being symptomatic of needing it out because her gallbladder function was borderline normal in tests. She ended up with a better appetite but did not fix all her symptoms. She inherited bad gallbladder from dad’s side.  She’s in her  3 trimester of pregnancy & won’t hear of a “diet” right now. I also think  she’s feels “done with being tested on” She had a tiny appetite before her testing so I’m sure her diet wasn’t high in gluten before testing like myself & I also don’t remember how deep they got into testing her for celiac. I keep sending her reading info so she’ll take this serious as she’s already having thyroid issues. My youngest went through some gi testing a few years ago, again I don’t remember if any celiac testing as her “gallbladder” seemed to be main focus, which was fine. She’s all up for testing “now” as the gluten-free diet has been so life changing. Her pediatrician  seems to think it’s a better idea to start with scope testing a couple hr drive away, rather than a blood panel at our  local hospital or even  a small skin biopsy from the local dermatologist as she’s dealing with DH like blisters. I’m currently waiting on their call back in my suggestion to try local testing first, day 2:(

My youngest had her swollen adenoids & tonsils removed at barely 3 years old. 
My oldest sleeps more than any human I know. 
I used to hold my breath when I was a baby, most likely due to anemia...& could go on & on with classic symptoms between the 3 of us. My nanny used to have unexplained seizures before she passed away years ago ...

I don’t need this diagnosis for myself, I already know. I just need a better “diagnosis” so that “both” my daughters will take all this serious. 

[Wheatwacked]

4 hours ago, April42 said:

She inherited bad gallbladder from dad’s side.

Choline and Folate are needed to prevent neural tube defects. Iodine to avoid cretanism. Maternal Vitamin D can effect your baby for life.

Choline – Gall Bladder, A Vital Organ That is Being Removed At Alarming Rates

Quote

Used by doctors since 1947. Choline is essential to effectively metabolize fat, cholesterol, proteins, and carbohydrates. Experience has shown that SP Choline is been a Nutritional Essential for people who suffer severe gall bladder symptoms and/or after gall bladder removal.

Gall Bladder Syndrome is one of the most expensive, easily preventable conditions affecting Americans, causing a reported 3,000 deaths and over 800,000 hospitalizations annually. Over 500,000 people undergo surgery for gall bladder disease each year! Amazingly we bring this on ourselves, and with a few key lifestyle changes this condition could be virtually eliminated. American Diet is the Cause  

"Choline is an essential nutrient for proper growth, development, and overall function of the human body, yet nine out of 10 Americans don’t get enough. Even if you supplement with choline, a recent study suggests that certain gut microbes could prevent proper choline absorption. This may be especially harmful during pregnancy. Read on to learn what the research tells us about choline and how to optimize your choline status to support overall health."   https://chriskresser.com/choline-sibo-and-pregnancy-whats-the-deal/

4 hours ago, April42 said:

she’s already having thyroid issues.

Iodine   Iodine and fertility: do we know enough?

Quote

Untreated mild elevation of thyroid-stimulating hormone (TSH) in early pregnancy has been found to be associated with increased risk of miscarriages and adverse perinatal outcome (van den Boogaard et al., 2011; Schneuer et al., 2012).

Maternal iodine also plays a significant role in neurological development of the fetus. 

Vitamin D  Vitamin D supplementation in pregnancy

Quote

The relationship between low vitamin D and adverse maternal outcomes such as pregnancy – induced hypertension,[7] high blood pressure in diabetic pregnancy,[8] gestational diabetes mellitus,[9] recurrent pregnancy loss,[10] preterm delivery,[11] primary Caesarian section,[12] and postpartum depression[13] has been documented in recent years.... using mathematical models, Holles et al. suggest that pregnant women should have a circulating vitamin D >40 ng/ml, irrespective of how it is achieved.... However, the benefit of vitamin D supplementation in pregnancy is potentially even greater than in the nonpregnant state. Yet, we continue to prescribe lower doses to pregnant women than to their nonpregnant peers, perhaps because of an unfounded fear of side effects.

 

[trents]

7 hours ago, April42 said:

 She’s all up for testing “now” as the gluten-free diet has been so life changing. Her pediatrician  seems to think it’s a better idea to start with scope testing a couple hr drive away, rather than a blood panel at our  local hospital or even  a small skin biopsy from the local dermatologist as she’s dealing with DH like blisters. I’m currently waiting on their call back in my suggestion to try local testing first, day 2:(

Are you referencing your gluten free diet or hers? If your daughter has already been eating gluten free there will have been healing in the small bowel and it will likely void the biopsy results.

[April42]

2 minutes ago, trents said:

Are you referencing your gluten free diet or hers? If your daughter has already been eating gluten free there will have been healing in the small bowel and it will likely void the biopsy results.

I’ve been gluten-free since May but have had a handful of run ins with gluten. My skin is clearing...absolutely. Maybe a little improvement in digestive issue. Still tired, still wake up itching during night, not rash related. I know it takes time & I think some detox symptoms also come into play?
She just started, it’s making her miserable, as many her favorites gluten filled. So now she’s back on as we wait on the doc to respond. And hope she’s not had much healing since she’s just been eliminating for a couple weeks. This is most frustrating:(

[April42]

2 hours ago, Wheatwacked said:

Choline and Folate are needed to prevent neural tube defects. Iodine to avoid cretanism. Maternal Vitamin D can effect your baby for life.

Choline – Gall Bladder, A Vital Organ That is Being Removed At Alarming Rates

"Choline is an essential nutrient for proper growth, development, and overall function of the human body, yet nine out of 10 Americans don’t get enough. Even if you supplement with choline, a recent study suggests that certain gut microbes could prevent proper choline absorption. This may be especially harmful during pregnancy. Read on to learn what the research tells us about choline and how to optimize your choline status to support overall health."   https://chriskresser.com/choline-sibo-and-pregnancy-whats-the-deal/

Iodine   Iodine and fertility: do we know enough?

Vitamin D  Vitamin D supplementation in pregnancy

 

I have been worrying about this sort of thing but was kinda scare to bring it up to her but if I feel I must after ready. Thank you, any & all information seems like a blessing to me! 
Speaking of blessings...

After praying hard last week for answers, l look over at my youngest during church this past Sunday & noticed a calcium spot on her tooth. Tiny & on the edge so very hard to see/notice. She said it comes & goes. According to what I found online can most definitely be celiac related. I don’t know if you know the Lord or not ...but my God answers prayers  

 

[trents]

For the biopsy test, the Mayo Clinic recommends being on gluten for at least two weeks to give valid test results. They recommend the consumption of an amount of gluten found in two slices of wheat bread daily or the equivalent.