My son's Ttg is still elevated after 3.5 years!

[Ava B]

My son was diagnosed with celiac disease and EOE 3.5 years ago, and I was diagnosed just one month after him. His tTg was 189 and mine was 211. We both began to follow the same strict gluten-free diet immediately, and within 6 months, my tTg had returned to normal while his remained significantly elevated. I make all of our food myself, he is also allergic to corn so we have never taken him to eat at restaurants and he is homeschooled. I'm extremely cautious (paranoid) to the point of purchasing a new stove, kitchen table and all new cooking equipment when we were first diagnosed. Our entire house is gluten free. After one year of very little change in the numbers, we took my son to U of Chicago, the doctor (Stefano Guandalini) there, suggested eliminating dairy for one year, which we immediately did, but when labs were again checked, there was no improvement. Then we met with a doc and dietician from The University of Maryland last summer. She suggested my son may be one of the few celiacs who reacts to the Avenin in oats as if it were giladin. I had been using gluten-free oat flour in all of my baking so I immediately cut out all oats. After 3 months, his tTg was down to 68 (from 120)! This was the lowest it's ever been and his doctor  was beyond thrilled! We all celebrated that we had finally figured out the culprit. I was instructed to keep doing exactly as I'd been doing for another 3 months when we would repeat the labs. We were all hopeful they would normalize then. Well, he had labs this past Friday and his tTg has remained at 65. I feel so defeated. I had an absolute meltdown yesterday as I thought about how many foods he has had to give up and how limited his diet alread is. I'm just lost and I feel so helpless. I must be missing something. His diet is so limited already with no gluten, corn, dairy, oats, etc. I had also cut out any processed snacks, even potato chips with 3 ingredients. He eats lean meats, eggs, fresh fruits, veggies, rice, a few certified gluten free items like past sauce and peanut butter and I bake homeade muffies (as bread) and waffles using Bob's Red Mill brown rice flour and Teff flour. My gut is telling me that my son might have to go completley grain free but frankly, no dietician has suggested this as it's not exactly good for a child who is growing and needs the nutrition grains provide! His doctor is completley stumped. He had no suggestions. I am meeting with two dieticians later this week, but it seems that no one knows what we should do. Apparently none of the doctors we've seen have had a child who was this sensitive. I've been warned that the next step is steroid treatment to return his tTg to normal. I don't want this at all! I feel as if I'm swinging at baseballs in the dark, cutting out so many foods as I try to guess what the culprit might be. I don't want his nutrition to suffer, he's already so thin and he's not gaining weight since removing the dairy. (I should also mention that I have a severe allergy to coconut so I am unable to keep it in the house to use for baking.)  We are also limited when using dairy free substitutes because of my son's corn allergy. Corn is literally in everything! I'm wondering if I should cut out the Teff flour and try to use only brown rice flour or if it's likely not the grain itself, but the brand BRM? I hate that BRM has the market captured on gluten-free baking flours and yet it's not even certified gluten free. If anyone has any suggestions on what I might be missing here, I would really appreciate it. Here is an example of what my son eats in a day:

Breakfast: scrambled eggs, orange slices, strawberries, bananas, gluten-free muffin, OJ.

Snack: banana or halo/cutie (manadarins)

Lunch: peanut butter sandwich with muffy bread, pear or apple. 

Snack: fruit or veggie

Dinner: brown rice pasta, bolognese sauce, steamed broccoli.

Dessert: half of a chocolate bar with 3 ingredients (from an allergy free shop).

Thank you for reading this and any thoughts you could offer would be so appreciated! 
 

Best regards, 

Ava

 

 

 

[trents]

Welcome to the forum, Ava!

You do not mention how old your son is. Has the diagnosis of celiac disease been confirmed with a biopsy? There are some other things besides celiac disease that can cause elevated tTG-IGA. It is a good test but not 100% specific.

I would ask that you reconsider the steroid treatment. Sometimes if you break the feedback loop of inflammation it resets the immune system and gets it back on track. He might not need to be on steroids continuously forever.

Going to a grain free diet might be a good trial. Fresh meat, fruit and vegetables only might be a good approach.

I was diagnosed with celiac disease about 20 years ago and have since developed intolerance to peanuts and eggs. If I eat more than one egg at a time I get a belly ache just like gluten gives me. Does he still consume soy? Soy is another common intolerance developed by celiacs.

It might also be good to have ALCAT food allergy testing done to see if there are things in his diet are upsetting his immune system. Not the same immune pathway as celiac disease but there might be crossover of some sort.

[Ava B]

Thank you so much for your reply. I will certainly look into the allergy tests you have mentioned and maybe it will shed some light on things. The grain free diet might also be an option. My son has just turned 10. He was diagnosed 3.5 years ago after biopsy (this was also when EOE was diagnosed as the doc noticed slight inflammation in the esophagus at the time of biopsy). His doctor and I have discussed the other issues that can cause persistent elevated tTg (liver disease, crohns, etc), but he feels these other conditions do not fit (based on symtoms, labs, etc.)The University of Maryland doctors explained that the steroid treatment can work for some children but not all and it has a lot of unpleasant side effects. There's also the worrying fact that we are in the middle of a pandemic and my youngest daughter has a primary immune deficiency, so the thought of having my son take immunosuppressants at this time is very frightening. I'm really hoping we don't have to go down that road. Thank you again for taking the time to reply to my post and for sharing your thoughts, I really appreciate it! This has felt like a lonely road for us! Take care and be well. 

[trents]

Thanks for more detail. It sounds like you certainly are needing to juggle a number of health concerns in your family. The EOE may be an indicator of a more general immune system issue than celiac disease alone. The EOE might be addressed by steroids as well. Children's immune systems are in the process of maturing and we get reports on this forum from people who were diagnosed with celiac disease early in life but experienced a period of remission in their teen_early adult years.

[knitty kitty]

@Ava B,

I recommend the book by Dr. Sarah Ballantyne, the Autoimmune Protocol Diet.  She is Celiac with Celiac kids and designed the diet which has been scientifically proven to promote healing.  

The AutoImmune Protocol diet is what I followed and experienced rapid healing.  The AIP diet removes dairy, grains, and legumes.  Nightshades are also on the "do not eat" list.  Nightshades (potatoes, tomatoes, eggplant and peppers) contain alkaloids that stimulate zonulin production which causes leaky gut syndrome which results in continuing inflammation.  

After several weeks of following the AIP diet, other foods can be added back into the diet slowly.  The emphasis is on grass fed beef, organic meats, fresh vegetables and some fruits.  Foods that are nutrient dense, like liver.  (Steam liver, don't fry it, for tender liver.)

Discuss with your doctor the benefits of supplementing with the eight B vitamins.  The B vitamins are usually absorbed in the same area where the damage from Celiac occurs, resulting in insufficient nutrient absorption.  B Complex vitamins are water soluble and cannot be stored for long, so they must be replenished every day.  

EOE has been linked to Vitamin B1, Thiamine, deficiency.  

http://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

Read Dr. Lonsdale's study linked on that page.  

I had EOE which only improved after supplementing with 300 mg thiamine a day and a B Complex supplement.  

Doctors seem to neglect the importance of vitamins and minerals when dealing with Celiac Disease.  As blood tests for most B vitamins are inaccurate, supplementing with a B Complex and looking for improvement is the best way to discover a deficiency.

Hope this helps!

 

[Ava B]

Thank you so much for sharing all of this info with me. I have heard of this diet, but I will pick up a copy of the book you mentioned. I agree that a lot of doctors don't consider the possibile benefits of supplements. Thanks for sharing about your experience with EOE! 

[RMJ]

The antibody tests aren’t actually approved by FDA for monitoring celiac disease after diagnosis - although many, many doctors use them that way.  I would think another endoscopy/biopsy would be in order to see if his intestine is still damaged.  Is he growing well?  Does he have any unresolved symptoms?  Or is the only issue the lab result?

[Ava B]

I have heard this as well and in fact, I consulted a pediatric GI in NZ who seemed to have a different way of looking at things when it comes to the tTg and the time it takes to heal.  It was really eye opening. My son hovers around the 38th percentile for height and the 29th percentile for weight. He does experience bouts of acid reflux, which his doctor attributes to his EOE. He may need a repeat scope and biopsy in a few months if the labs come back elevated again. Thank you so much for your reply to my post. I appreciate it! 

[knitty kitty]

@Ava B,

Acid reflux (GERD) is another symptom of Thiamine insufficiency.  

Vitamin D deficiency is prevalent in children who lag behind on growth charts.  

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-019-1840-4

 

[CeliacMom57]

On 2/8/2022 at 10:27 AM, Ava B said:

My son was diagnosed with celiac disease and EOE 3.5 years ago, and I was diagnosed just one month after him. His tTg was 189 and mine was 211. We both began to follow the same strict gluten-free diet immediately, and within 6 months, my tTg had returned to normal while his remained significantly elevated. I make all of our food myself, he is also allergic to corn so we have never taken him to eat at restaurants and he is homeschooled. I'm extremely cautious (paranoid) to the point of purchasing a new stove, kitchen table and all new cooking equipment when we were first diagnosed. Our entire house is gluten free. After one year of very little change in the numbers, we took my son to U of Chicago, the doctor (Stefano Guandalini) there, suggested eliminating dairy for one year, which we immediately did, but when labs were again checked, there was no improvement. Then we met with a doc and dietician from The University of Maryland last summer. She suggested my son may be one of the few celiacs who reacts to the Avenin in oats as if it were giladin. I had been using gluten-free oat flour in all of my baking so I immediately cut out all oats. After 3 months, his tTg was down to 68 (from 120)! This was the lowest it's ever been and his doctor  was beyond thrilled! We all celebrated that we had finally figured out the culprit. I was instructed to keep doing exactly as I'd been doing for another 3 months when we would repeat the labs. We were all hopeful they would normalize then. Well, he had labs this past Friday and his tTg has remained at 65. I feel so defeated. I had an absolute meltdown yesterday as I thought about how many foods he has had to give up and how limited his diet alread is. I'm just lost and I feel so helpless. I must be missing something. His diet is so limited already with no gluten, corn, dairy, oats, etc. I had also cut out any processed snacks, even potato chips with 3 ingredients. He eats lean meats, eggs, fresh fruits, veggies, rice, a few certified gluten free items like past sauce and peanut butter and I bake homeade muffies (as bread) and waffles using Bob's Red Mill brown rice flour and Teff flour. My gut is telling me that my son might have to go completley grain free but frankly, no dietician has suggested this as it's not exactly good for a child who is growing and needs the nutrition grains provide! His doctor is completley stumped. He had no suggestions. I am meeting with two dieticians later this week, but it seems that no one knows what we should do. Apparently none of the doctors we've seen have had a child who was this sensitive. I've been warned that the next step is steroid treatment to return his tTg to normal. I don't want this at all! I feel as if I'm swinging at baseballs in the dark, cutting out so many foods as I try to guess what the culprit might be. I don't want his nutrition to suffer, he's already so thin and he's not gaining weight since removing the dairy. (I should also mention that I have a severe allergy to coconut so I am unable to keep it in the house to use for baking.)  We are also limited when using dairy free substitutes because of my son's corn allergy. Corn is literally in everything! I'm wondering if I should cut out the Teff flour and try to use only brown rice flour or if it's likely not the grain itself, but the brand BRM? I hate that BRM has the market captured on gluten-free baking flours and yet it's not even certified gluten free. If anyone has any suggestions on what I might be missing here, I would really appreciate it. Here is an example of what my son eats in a day:

Breakfast: scrambled eggs, orange slices, strawberries, bananas, gluten-free muffin, OJ.

Snack: banana or halo/cutie (manadarins)

Lunch: peanut butter sandwich with muffy bread, pear or apple. 

Snack: fruit or veggie

Dinner: brown rice pasta, bolognese sauce, steamed broccoli.

Dessert: half of a chocolate bar with 3 ingredients (from an allergy free shop).

Thank you for reading this and any thoughts you could offer would be so appreciated! 
 

Best regards, 

Ava

 

 

 

Hi Ava,

My daughter is in a similar situation. Diagnosed with Celiac  2 1/2 years ago. All labs normal now except for TTg hovering around 44. 2nd endoscopy showed fully healed villi, which proves she is compliant with the gluten-free diet.  

She still has lingering nausea and bloating, and the TTG.  We prepare all our own food; she is not comfortable eating food in other kitchens. I purchased new pots/pans, replaced all wooden utensils/cutting boards, new colanders, and scrubbed anything else with steel wool and numerous runs through the dishwasher. Replaced all plastic storage containers as well.  We all eat gluten-free; gluten does not come into the house.

Due to her lingering symptoms, we progressed to no oats; then removed corn. Then went totally paleo--no grains at all, minimally processed 'clean' food.  Still no improvement. TTG holding in the 40's, nausea/bloating. She does not consume dairy, or eat cheese.

She tried the AIP elimination diet; discovered issues with eggs. So eggs are gone.  She tried low FODMAP for the nausea/bloating--no help there.

She met with her gastro doc just last week. He is stumped as well.

I know this is not a solution, but there is another person in the same boat. Hopefully hearing w what we have eliminated can help you decide if you want to go down that path further.

My research has discovered that Celiac and other food sensitivities can happen together. Just this morning I found articles that suggest Crohn's disease can cause the elevated TTG. Crohn's and Celiac are linked together.

 

 

 

[Ava B]

Thank you so much for sharing your experience. I'm really sorry to hear that your daughter is still having nausea and bloating, that must be so frustrating for her and for you. It sounds like you've done everything in your power to get to the bottom of this and to help her. I admire your dedication and perseverance, trying all of the special diets you've tried. I'm sure that like me, you've likely found cooking and baking with so many limitations to be quite the daunting task! My son still has bouts of reflux and some nausea along with it, but because he also has EOE and a corn allergy, it's tough to know what is actually causing these symptoms. I was happy to read that your daughter's second biopsy showed that she has healed, I'm sure that was a big relief. As I mentioned in my post, I was diagnosed through biopsy just one month after my son's diagnosis. My tTg has returned to normal and healing has taken place, but like your daughter, I still experience nausea and in all honesty, I feel worse now than I did before my diagnosis! Weirdly enough, pre-diagnosis, I only rarely had a stomach ache and I usually chalked it up to eating too much at one sitting! It seems as if the moment I stopped eating gluten, all of a sudden I developed many food intolerances. For the first time in my life, I struggle with eating legumes, dairy, fructose, and the list goes on. I have also been concerned about Crohn's when it comes to my son as well as myself. I consulted a well known Pediatric Gastrointerologist from NZ regarding my son's slow healing, he was very helpful and actually mentioned that in his experience, it is not uncommon for children to have a persistently elevated tTg and that it can take awhile for that number to come down. He seemed far less concerned about the number than he was about healing having taken place. I hope that offers you a bit of reassurance. I really appreciate you sharing about the diets you have tried for your daughter. I'm sure it's been difficult for her to have so many restrictions and very disheartening when it doesn't help to eliminate her uncomfortable symptoms or lower her antibodies. Our next step is to cut more foods, but my son's diet is so restrictive already, I'm beginning to wonder if eliminating all of these foods will really make a difference or if will possibly cause more harm than good! May I ask if your daughter has resumed eating grains? I am hoping we will be able to introduce dairy again at some point. I think my son misses cheese, butter and ice cream more than he misses gluten containing items! The oats have been missed a lot too in our house. We loved oat pancakes and oatmeal cookies. Thank you again so much for all that you've shared, I really appreciated reading it and I will be hoping your daughter makes a full recovery very soon! 

[CeliacMom57]

Hi Eva,

 

My daughter does eat rice now, but that is the only grain.

 

As for diet restrictions--we try to have fun. My dad had kidney disease and is on the 'kidney' diet (low potassium). I have tree nut allergies and poppy seed allergy. We had fun coming up with a Thanksgiving dinner menu that accommodated everyone!  Before all of this I was an avid bread baker, and so took on the challenge of making delicious gluten-free breads!

 

Try not to look at the food issues as restrictions and enjoy discovering new foods!  

[Darren]

On 2/8/2022 at 9:27 AM, Ava B said:

My son was diagnosed with celiac disease and EOE 3.5 years ago, and I was diagnosed just one month after him. His tTg was 189 and mine was 211. We both began to follow the same strict gluten-free diet immediately, and within 6 months, my tTg had returned to normal while his remained significantly elevated. I make all of our food myself, he is also allergic to corn so we have never taken him to eat at restaurants and he is homeschooled. I'm extremely cautious (paranoid) to the point of purchasing a new stove, kitchen table and all new cooking equipment when we were first diagnosed. Our entire house is gluten free. After one year of very little change in the numbers, we took my son to U of Chicago, the doctor (Stefano Guandalini) there, suggested eliminating dairy for one year, which we immediately did, but when labs were again checked, there was no improvement. Then we met with a doc and dietician from The University of Maryland last summer. She suggested my son may be one of the few celiacs who reacts to the Avenin in oats as if it were giladin. I had been using gluten-free oat flour in all of my baking so I immediately cut out all oats. After 3 months, his tTg was down to 68 (from 120)! This was the lowest it's ever been and his doctor  was beyond thrilled! We all celebrated that we had finally figured out the culprit. I was instructed to keep doing exactly as I'd been doing for another 3 months when we would repeat the labs. We were all hopeful they would normalize then. Well, he had labs this past Friday and his tTg has remained at 65. I feel so defeated. I had an absolute meltdown yesterday as I thought about how many foods he has had to give up and how limited his diet alread is. I'm just lost and I feel so helpless. I must be missing something. His diet is so limited already with no gluten, corn, dairy, oats, etc. I had also cut out any processed snacks, even potato chips with 3 ingredients. He eats lean meats, eggs, fresh fruits, veggies, rice, a few certified gluten free items like past sauce and peanut butter and I bake homeade muffies (as bread) and waffles using Bob's Red Mill brown rice flour and Teff flour. My gut is telling me that my son might have to go completley grain free but frankly, no dietician has suggested this as it's not exactly good for a child who is growing and needs the nutrition grains provide! His doctor is completley stumped. He had no suggestions. I am meeting with two dieticians later this week, but it seems that no one knows what we should do. Apparently none of the doctors we've seen have had a child who was this sensitive. I've been warned that the next step is steroid treatment to return his tTg to normal. I don't want this at all! I feel as if I'm swinging at baseballs in the dark, cutting out so many foods as I try to guess what the culprit might be. I don't want his nutrition to suffer, he's already so thin and he's not gaining weight since removing the dairy. (I should also mention that I have a severe allergy to coconut so I am unable to keep it in the house to use for baking.)  We are also limited when using dairy free substitutes because of my son's corn allergy. Corn is literally in everything! I'm wondering if I should cut out the Teff flour and try to use only brown rice flour or if it's likely not the grain itself, but the brand BRM? I hate that BRM has the market captured on gluten-free baking flours and yet it's not even certified gluten free. If anyone has any suggestions on what I might be missing here, I would really appreciate it. Here is an example of what my son eats in a day:

Breakfast: scrambled eggs, orange slices, strawberries, bananas, gluten-free muffin, OJ.

Snack: banana or halo/cutie (manadarins)

Lunch: peanut butter sandwich with muffy bread, pear or apple. 

Snack: fruit or veggie

Dinner: brown rice pasta, bolognese sauce, steamed broccoli.

Dessert: half of a chocolate bar with 3 ingredients (from an allergy free shop).

Thank you for reading this and any thoughts you could offer would be so appreciated! 
 

Best regards, 

Ava

 

 

 

Hi Ava, sorry to hear about this, it is stressful. I cam only tell you my experience and maybe it will help. I'm in my late 40s and was diagnosed about 7 years ago. I get ttg test every year just to see how the levels are. I am very strict 100% of the time. I also have DH skin reaction which sucks but the good thing is that it helps me to identify triggers since I am and always was asymptomatic until I became anemic due to nutrition absorption issues.  Sometimes my results still show positive due to exposure.  It take a very very very long time for the numbers to decrease. 3 months is nothing. So dont worry about that the good news is it didnt go up! Understand that that is great! It can take years to go down, it took my over 2 years and even then last year it went up a little,  them back down once I sourced the problem. if they are getting lower over time then that means you are doing great! Dont worry about how high the number is, just as long as it's going down.  I found that oats give me a DH reaction even Bob's mills, so eliminated oats and that helped. If I were you I wouldnt remove everything. Dont remove oats and dairy and corn all at once. Just remove corn and oats because you already know he is allergic to corn per testing I assume. If not get him tested. And keep doing no oats, that's what helped me. Dairy would be immediately noticeable if it caused a problem. If it doesnt, dont eliminate it because dairly will not cause ttg response.  I suggest testing his vitamin levels...get a panel done. If his numbers are normal range then that means he is absorbing nutrients and everything is ok. If they are low then you know there is an absorption problem and more elimination needs to be done.  So I would just try no oats and corn. Keep the rest. For processed snacks allow anything that is certified gluten free. Certified-only so he can have several brands of good chips. Target has them, kettle brand etc. I had gluten free cape cod chips and have a reaction. So stick with certified only because the cause might be so called gluten free chips. Allow him the fun of snacks, that too is important for his well being. Certified is safe you can trust it. Do the vitamin panel before steroids to get complete picture of the impact. Sorry if this is rambling a bit  I'd love to help more somehow...  just be patient with the test results. Again, mine took 3 years to go all the way down to negative and I am very strict.

[Darren]

1 minute ago, Darren said:

Hi Ava, sorry to hear about this, it is stressful. I cam only tell you my experience and maybe it will help. I'm in my late 40s and was diagnosed about 7 years ago. I get ttg test every year just to see how the levels are. I am very strict 100% of the time. I also have DH skin reaction which sucks but the good thing is that it helps me to identify triggers since I am and always was asymptomatic until I became anemic due to nutrition absorption issues.  Sometimes my results still show positive due to exposure.  It take a very very very long time for the numbers to decrease. 3 months is nothing. So dont worry about that the good news is it didnt go up! Understand that that is great! It can take years to go down, it took my over 2 years and even then last year it went up a little,  them back down once I sourced the problem. if they are getting lower over time then that means you are doing great! Dont worry about how high the number is, just as long as it's going down.  I found that oats give me a DH reaction even Bob's mills, so eliminated oats and that helped. If I were you I wouldnt remove everything. Dont remove oats and dairy and corn all at once. Just remove corn and oats because you already know he is allergic to corn per testing I assume. If not get him tested. And keep doing no oats, that's what helped me. Dairy would be immediately noticeable if it caused a problem. If it doesnt, dont eliminate it because dairly will not cause ttg response.  I suggest testing his vitamin levels...get a panel done. If his numbers are normal range then that means he is absorbing nutrients and everything is ok. If they are low then you know there is an absorption problem and more elimination needs to be done.  So I would just try no oats and corn. Keep the rest. For processed snacks allow anything that is certified gluten free. Certified-only so he can have several brands of good chips. Target has them, kettle brand etc. I had gluten free cape cod chips and have a reaction. So stick with certified only because the cause might be so called gluten free chips. Allow him the fun of snacks, that too is important for his well being. Certified is safe you can trust it. Do the vitamin panel before steroids to get complete picture of the impact. Sorry if this is rambling a bit  I'd love to help more somehow...  just be patient with the test results. Again, mine took 3 years to go all the way down to negative and I am very strict.

I meant to add...is the rice gluten free brand? Make sure it is. I use Ben's Original it's safe. Cheaper brands may not be...

[trents]

Darren, I am not sure it is true that dairy intolerance will not create positive tTG-IGA results, but I could be wrong. Research has shown that for some celiacs, dairy can cause inflammation and villi blunting. Now, I'm not talking about lactose intolerance, I'm talking about the effect that the dairy protein "casein" can have.

[Darren]

Your absolutely correct that some celiac have problems with dairy. I'm not sure that it can ttg levels though, perhaps it can.  I still recommend only eliminating one thing at a time or she will never know what specifically is causing the response.

[trents]

1 hour ago, Darren said:

Your absolutely correct that some celiac have problems with dairy. I'm not sure that it can ttg levels though, perhaps it can.  I still recommend only eliminating one thing at a time or she will never know what specifically is causing the response.

Or, she could eliminate all three and then add each one back in one at a time. That way, you have more probability of including the offender from the get go.

[Ava B]

18 hours ago, Darren said:

I meant to add...is the rice gluten free brand? Make sure it is. I use Ben's Original it's safe. Cheaper brands may not be...

 

18 hours ago, Darren said:

I meant to add...is the rice gluten free brand? Make sure it is. I use Ben's Original it's safe. Cheaper brands may not be...

 

18 hours ago, Darren said:

Hi Ava, sorry to hear about this, it is stressful. I cam only tell you my experience and maybe it will help. I'm in my late 40s and was diagnosed about 7 years ago. I get ttg test every year just to see how the levels are. I am very strict 100% of the time. I also have DH skin reaction which sucks but the good thing is that it helps me to identify triggers since I am and always was asymptomatic until I became anemic due to nutrition absorption issues.  Sometimes my results still show positive due to exposure.  It take a very very very long time for the numbers to decrease. 3 months is nothing. So dont worry about that the good news is it didnt go up! Understand that that is great! It can take years to go down, it took my over 2 years and even then last year it went up a little,  them back down once I sourced the problem. if they are getting lower over time then that means you are doing great! Dont worry about how high the number is, just as long as it's going down.  I found that oats give me a DH reaction even Bob's mills, so eliminated oats and that helped. If I were you I wouldnt remove everything. Dont remove oats and dairy and corn all at once. Just remove corn and oats because you already know he is allergic to corn per testing I assume. If not get him tested. And keep doing no oats, that's what helped me. Dairy would be immediately noticeable if it caused a problem. If it doesnt, dont eliminate it because dairly will not cause ttg response.  I suggest testing his vitamin levels...get a panel done. If his numbers are normal range then that means he is absorbing nutrients and everything is ok. If they are low then you know there is an absorption problem and more elimination needs to be done.  So I would just try no oats and corn. Keep the rest. For processed snacks allow anything that is certified gluten free. Certified-only so he can have several brands of good chips. Target has them, kettle brand etc. I had gluten free cape cod chips and have a reaction. So stick with certified only because the cause might be so called gluten free chips. Allow him the fun of snacks, that too is important for his well being. Certified is safe you can trust it. Do the vitamin panel before steroids to get complete picture of the impact. Sorry if this is rambling a bit  I'd love to help more somehow...  just be patient with the test results. Again, mine took 3 years to go all the way down to negative and I am very strict.

Thank you so much for sharing your experience Darren. I was diagnosed through biopsy a few years ago, and like you, I was asymptomatic aside from being diagnosed with iron deficiency anemia years before. The only reason I was tested at all was because my son was diagnosed so I asked my physician if I could have the antibody test done as well. I really don't know how long I was living with this disease without knowing about it!

Interestingly, I used to occasionally give my son Cape Cod potato chips with sandwiches. I had called the company to ensure they were not produced with other gluten containing flavored chips or snacks and I was satisfied with their  response. Well, when my son's numbers were still elevated, his doctor suggested I eliminate any processed snack foods (we really only gave him 3 non-homeade items anyway, Lara bars, potato chips and chocolates with 3 ingredients). So we stopped buying any processed snacks including the chips. Our dietician just told me last week that Cape Cod brand chips are safe to reintroduce, and I've been excited to give them to him again as a special treat here and there, but now, after reading about your experience with these chips, I'm going to look to another brand! 

Do you use other flour's by BRM? We have continued to use their gluten-free teff flour, brown rice flour and sweet white rice flour. It seems like BRM is well tolerated by many, but I have wondered if this brand could be the problem for my son. Have you ever tried Montana gluten free oats? 

Thank you again for sharing a bit of your story with me and for your encouragement! I appreciate your suggestions and I hope you stay healthy and happy in 2022! 

[Ava B]

17 hours ago, trents said:

Or, she could eliminate all three and then add each one back in one at a time. That way, you have more probability of including the offender from the get go.

I was just discussing this very thing last evening! I actually regret eliminating oats and dairy at the same time, because now we don't know which one was the offender. Looking back, I wish I had first emimnated oats only, because cutting all dairy products out was such a huge decrease in calories and fat for him. I sort of panicked because his doctor had run out of ideas and basically told me I had 3 months to get the numbers down or he would need to give him steroids. I wish I had explained that I'd like to try eliminating only one thing at a time. I hope that we can try dairy again soon. 

[Darren]

I'm not a Dr of course, but numbers will not drop all the way down in 3 months. As long as the trend is down things are on the right track. Maybe stay as is, but let him have certified gluten-free chips or snacks so he gets something enjoyable through all this, and see where the numbers end up. Check vitamin levels to see if they are ok which shows absorption is ok. If dr allows the time and still suggests steroids it's worth a try. Is his dr a gastroenterologist?  If not go to one before a general practitioner gives shots. However short term use of steroids is safe. Hang in there!  Things will work out with time.

[knitty kitty]

Thought this might help...

https://www.celiac.com/celiac-disease/anti-tissue-transglutaminase-antibodies-may-be-associated-with-cows-milk-protein-in-addition-to-gluten-intake-r5441/

 

[trents]

This came to my inbox just this morning. Very enlightening concerning slow healing and refractory celiac disease.

https://www.beyondceliac.org/research-news/ask-science-team-symptoms/?utm_campaign=Research Opt-In&utm_medium=email&_hsmi=204116257&_hsenc=p2ANqtz-85lGpXM38uHuLpzJFXHQFGdrmU-QxQ7ovsk-bSR02QFSyskV3q1Wes46O8cABnYa4xkj-TSl9WIo38mie8OFmherLWXg&utm_content=204116257&utm_source=hs_email

[Suzisqueue]

On 2/8/2022 at 1:12 PM, Ava B said:

I have heard this as well and in fact, I consulted a pediatric GI in NZ who seemed to have a different way of looking at things when it comes to the tTg and the time it takes to heal.  It was really eye opening. My son hovers around the 38th percentile for height and the 29th percentile for weight. He does experience bouts of acid reflux, which his doctor attributes to his EOE. He may need a repeat scope and biopsy in a few months if the labs come back elevated again. Thank you so much for your reply to my post. I appreciate it! 

So sorry to hear about your son's issues. I'm here myself searching for solutions for acid reflux. I was diagnosed with celiacs by a endocrinologist. Been gluten free (all dicot grains) and sugar free for 14 years now. Diet has been monosaccharide, Disaccharides, monocot grains and protein. All dicot grains have some gluten... if your eating a lot of rice, or corn you could be getting glutened!! Watch for that. My diet has worked great for years but now the acid reflux is awful. Get the endoscopy soon. : (

What I've learned from my own experience, and may be helpful, is gluten is everywhere, could be in soap, toothpaste, shampoos, etc. Stuff you'd never even dream for a reason for it to be there, and it's in there. So maybe check that out 

Might also be good idea to check the endocrine pancreas and enzyme levels, he could be deficient in some enzyme and just not digesting, gets the microbiome upset... And freaking yeast overgrowth that causes more leaky gut. 

This whole deal is all about keeping the little gut bugs happy, so when you're eating you're actually feeding them! Food is medicine. : )

I read a post in another forum suggesting mastic gum (and some more natural stuff). I'm going to give it a try, fingers crossed.

Mastc gum sounds safe without any side effects, be worth the $12 is it helps

Hope your son is doing better soon.

 

[Celiawithceliac1]

On 2/8/2022 at 10:27 AM, Ava B said:

My son was diagnosed with celiac disease and EOE 3.5 years ago, and I was diagnosed just one month after him. His tTg was 189 and mine was 211. We both began to follow the same strict gluten-free diet immediately, and within 6 months, my tTg had returned to normal while his remained significantly elevated. I make all of our food myself, he is also allergic to corn so we have never taken him to eat at restaurants and he is homeschooled. I'm extremely cautious (paranoid) to the point of purchasing a new stove, kitchen table and all new cooking equipment when we were first diagnosed. Our entire house is gluten free. After one year of very little change in the numbers, we took my son to U of Chicago, the doctor (Stefano Guandalini) there, suggested eliminating dairy for one year, which we immediately did, but when labs were again checked, there was no improvement. Then we met with a doc and dietician from The University of Maryland last summer. She suggested my son may be one of the few celiacs who reacts to the Avenin in oats as if it were giladin. I had been using gluten-free oat flour in all of my baking so I immediately cut out all oats. After 3 months, his tTg was down to 68 (from 120)! This was the lowest it's ever been and his doctor  was beyond thrilled! We all celebrated that we had finally figured out the culprit. I was instructed to keep doing exactly as I'd been doing for another 3 months when we would repeat the labs. We were all hopeful they would normalize then. Well, he had labs this past Friday and his tTg has remained at 65. I feel so defeated. I had an absolute meltdown yesterday as I thought about how many foods he has had to give up and how limited his diet alread is. I'm just lost and I feel so helpless. I must be missing something. His diet is so limited already with no gluten, corn, dairy, oats, etc. I had also cut out any processed snacks, even potato chips with 3 ingredients. He eats lean meats, eggs, fresh fruits, veggies, rice, a few certified gluten free items like past sauce and peanut butter and I bake homeade muffies (as bread) and waffles using Bob's Red Mill brown rice flour and Teff flour. My gut is telling me that my son might have to go completley grain free but frankly, no dietician has suggested this as it's not exactly good for a child who is growing and needs the nutrition grains provide! His doctor is completley stumped. He had no suggestions. I am meeting with two dieticians later this week, but it seems that no one knows what we should do. Apparently none of the doctors we've seen have had a child who was this sensitive. I've been warned that the next step is steroid treatment to return his tTg to normal. I don't want this at all! I feel as if I'm swinging at baseballs in the dark, cutting out so many foods as I try to guess what the culprit might be. I don't want his nutrition to suffer, he's already so thin and he's not gaining weight since removing the dairy. (I should also mention that I have a severe allergy to coconut so I am unable to keep it in the house to use for baking.)  We are also limited when using dairy free substitutes because of my son's corn allergy. Corn is literally in everything! I'm wondering if I should cut out the Teff flour and try to use only brown rice flour or if it's likely not the grain itself, but the brand BRM? I hate that BRM has the market captured on gluten-free baking flours and yet it's not even certified gluten free. If anyone has any suggestions on what I might be missing here, I would really appreciate it. Here is an example of what my son eats in a day:

Breakfast: scrambled eggs, orange slices, strawberries, bananas, gluten-free muffin, OJ.

Snack: banana or halo/cutie (manadarins)

Lunch: peanut butter sandwich with muffy bread, pear or apple. 

Snack: fruit or veggie

Dinner: brown rice pasta, bolognese sauce, steamed broccoli.

Dessert: half of a chocolate bar with 3 ingredients (from an allergy free shop).

Thank you for reading this and any thoughts you could offer would be so appreciated! 
 

Best regards, 

Ava

 

 

 

Hi love,

 

im sorry you’re dealing with this. It’s great you’ve already made so much progress!

so here’s the truth. All grains contain Prolamines. Grains provide no nutrients to people with gluten sensitivity as they are extremely inflammatory and toxic to us. 
look up Dr Peter Osborne on YouTube. He saved my life (I was like your son. Strict gluten-free home and didn’t heal until I went fully grain free.) 

the GOOD news is fruit, veggies and meat are all grain free and delicious and highly nutrient dense. 
 

I hope he feels better. 
and you get peace of mind 💗

[europyia]

On 2/8/2022 at 10:27 AM, Ava B said:

My son was diagnosed with celiac disease and EOE 3.5 years ago, and I was diagnosed just one month after him. His tTg was 189 and mine was 211. We both began to follow the same strict gluten-free diet immediately, and within 6 months, my tTg had returned to normal while his remained significantly elevated. I make all of our food myself, he is also allergic to corn so we have never taken him to eat at restaurants and he is homeschooled. I'm extremely cautious (paranoid) to the point of purchasing a new stove, kitchen table and all new cooking equipment when we were first diagnosed. Our entire house is gluten free. After one year of very little change in the numbers, we took my son to U of Chicago, the doctor (Stefano Guandalini) there, suggested eliminating dairy for one year, which we immediately did, but when labs were again checked, there was no improvement. Then we met with a doc and dietician from The University of Maryland last summer. She suggested my son may be one of the few celiacs who reacts to the Avenin in oats as if it were giladin. I had been using gluten-free oat flour in all of my baking so I immediately cut out all oats. After 3 months, his tTg was down to 68 (from 120)! This was the lowest it's ever been and his doctor  was beyond thrilled! We all celebrated that we had finally figured out the culprit. I was instructed to keep doing exactly as I'd been doing for another 3 months when we would repeat the labs. We were all hopeful they would normalize then. Well, he had labs this past Friday and his tTg has remained at 65. I feel so defeated. I had an absolute meltdown yesterday as I thought about how many foods he has had to give up and how limited his diet alread is. I'm just lost and I feel so helpless. I must be missing something. His diet is so limited already with no gluten, corn, dairy, oats, etc. I had also cut out any processed snacks, even potato chips with 3 ingredients. He eats lean meats, eggs, fresh fruits, veggies, rice, a few certified gluten free items like past sauce and peanut butter and I bake homeade muffies (as bread) and waffles using Bob's Red Mill brown rice flour and Teff flour. My gut is telling me that my son might have to go completley grain free but frankly, no dietician has suggested this as it's not exactly good for a child who is growing and needs the nutrition grains provide! His doctor is completley stumped. He had no suggestions. I am meeting with two dieticians later this week, but it seems that no one knows what we should do. Apparently none of the doctors we've seen have had a child who was this sensitive. I've been warned that the next step is steroid treatment to return his tTg to normal. I don't want this at all! I feel as if I'm swinging at baseballs in the dark, cutting out so many foods as I try to guess what the culprit might be. I don't want his nutrition to suffer, he's already so thin and he's not gaining weight since removing the dairy. (I should also mention that I have a severe allergy to coconut so I am unable to keep it in the house to use for baking.)  We are also limited when using dairy free substitutes because of my son's corn allergy. Corn is literally in everything! I'm wondering if I should cut out the Teff flour and try to use only brown rice flour or if it's likely not the grain itself, but the brand BRM? I hate that BRM has the market captured on gluten-free baking flours and yet it's not even certified gluten free. If anyone has any suggestions on what I might be missing here, I would really appreciate it. Here is an example of what my son eats in a day:

Breakfast: scrambled eggs, orange slices, strawberries, bananas, gluten-free muffin, OJ.

Snack: banana or halo/cutie (manadarins)

Lunch: peanut butter sandwich with muffy bread, pear or apple. 

Snack: fruit or veggie

Dinner: brown rice pasta, bolognese sauce, steamed broccoli.

Dessert: half of a chocolate bar with 3 ingredients (from an allergy free shop).

Thank you for reading this and any thoughts you could offer would be so appreciated! 
 

Best regards, 

Ava

 

 

 

I bet its the eggs, momma😔