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Omg...i Might Be On To Something


Rachel--24

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Daxin Explorer
Dax... did you see my reply to you? I know stuff gets lsot here fast :D

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Vincent -- I did see your reply, a few years ago we had a child psychologist refer us to a psychiatrist after she had several sessions with Blake (DS) and they both decided it was what they called a mixed type ADHD with a bit of ODD thrown on top. We explored other avenues as well, but they did not think he was Autistic. (He is my step-son however, and Dr. decided to also reduce gluten intake as I was already on Celiac food intake) and see if it made a difference in his temper (as it does for me).


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dlp252 Apprentice
Donna,

What list are you following? All the lists I seen show plums as being high in histamine. :huh:

It was from one of the websites that Julie (I think) posted about 20-30 pages ago, lol. I'm sorry to say that I didn't check out any of the sites you mentioned (you did mention some didn't you...talk about brain farts, lol) when you mentioned them and then I couldn't find them in this novel sized thread. :ph34r::lol:

Rachel--24 Collaborator

Hmmm....I'm just sitting here drinking my water for the test and all of a sudden for no apparant reason my head is swelling and not feeling too good. I've been drinking Aquafina after all the talk about water challenges and right now I didnt have enough so drank 2 bottles Aquafina and once I switched to Arrowhead for my 3rd bottle I'm noticeably reacting to the Arrowhead. It doesnt taste as good either. I think Arrowhead's water is "dirty". <_<

dlp252 Apprentice
Hmmm....I'm just sitting here drinking my water for the test and all of a sudden for no apparant reason my head is swelling and not feeling too good. I've been drinking Aquafina after all the talk about water challenges and right now I didnt have enough so drank 2 bottles Aquafina and once I switched to Arrowhead for my 3rd bottle I'm noticeably reacting to the Arrowhead. It doesnt taste as good either. I think Arrowhead's water is "dirty". <_<

Oh NO!!! You haven't had the alien baby scan yet have you? Hopefully the alien baby won't notice the dirty water!

AndreaB Contributor
Hmmm....I'm just sitting here drinking my water for the test and all of a sudden for no apparant reason my head is swelling and not feeling too good. I've been drinking Aquafina after all the talk about water challenges and right now I didnt have enough so drank 2 bottles Aquafina and once I switched to Arrowhead for my 3rd bottle I'm noticeably reacting to the Arrowhead. It doesnt taste as good either. I think Arrowhead's water is "dirty". <_<

We bought arrowhead last time and I got a headache too, but I didn't put it totally together. I think my hubby wound up pouring it out and getting me our filtered water. We buy bottled water when we need a clean bottle.

jenyanderson Newbie
Vincent -- I did see your reply, a few years ago we had a child psychologist refer us to a psychiatrist after she had several sessions with Blake (DS) and they both decided it was what they called a mixed type ADHD with a bit of ODD thrown on top. We explored other avenues as well, but they did not think he was Autistic. (He is my step-son however, and Dr. decided to also reduce gluten intake as I was already on Celiac food intake) and see if it made a difference in his temper (as it does for me).

We have military healthcare also and my DH and I were wondering how they can come up with a diagnosis based on two or three sessions with the kids. Our daughter was referred by her first grade teacher because she thought DD had ADD. The psychiatrist thought she was on the cusp of Asperger's and had ADHD and depression. I think that she might, but how do they know when they don't know her. Do you wonder this? They aren't treating the ADHD so to speak. They're trying to work on her behavior. We're thinking of getting a second opinion, but I don't know. Any thoughts ya'll?

Camille'sBigSister Newbie
Yea, Cissie! You just described my childhood summers :D We had a vine, too! It was on the hillside grounds of our school (that was just up the street). We would give a running start, and swing in a great big circle where we would be way out above the hill! We played jumprope, hopscotch and hide and go seek. Other than bikes, we had not much except our imaginations--but we always had something to do. (and knew what not to tell our mothers!) My favorite "alone time" thing to do was to climb up in our backyard tree and read. I was a bit of a daydreamer, so I did a lot of that, too. Good times :D

My boys grew up in the 80's--they were welcomed to play any sports/attend any clubs that they wanted. It was their decision--my oldest played league bowling (and still does to this day at 25) and baseball (which he loves). My youngest was not into sports at all, and that was fine, too. He has other interests. I did my best to let them be kids and not have every minute spoken for. They are now both hardworking young men who also have hobbies--a good, healthy mix, in my opinion!

Hooray for "alone time!" I climbed a wild cherry tree and swung onto the garage roof (flat with slight slope) for my private time. Sometimes I read, and sometimes I just daydreamed. I learned to swing on vines the summer I was twelve. We drove across the state to East Tennessee, and spent a couple of months with mother's fourth cousin thrice removed, Lula, and her husband. Daddy had to return to work in Memphis after two weeks, but it took two months for him to save enough gas coupons to come back for us. What a glorious summer that was! :D:D:D

My children grew up in the 50's and 60's, and had the same freedom to decide that you gave your sons. I confess that I started them on the road to independent thinking by refusing to allow them to have coloring books. Instead, they colored, drew, and painted on blank sheets of paper. (I was always a rebel.) My theory was that the world would soon enough make them "color in the lines," and I wanted to root them in the freedom to say, "Not if I don't want to!" They're middle-aged now, and I'm so proud of the choices they've made and the people they've become!

Cissie


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Green12 Enthusiast
We bought arrowhead last time and I got a headache too, but I didn't put it totally together. I think my hubby wound up pouring it out and getting me our filtered water. We buy bottled water when we need a clean bottle.

I got a headache trying out the spring water too, I guess that makes three of us...and I didn't think it tasted right. :blink:

Rachel, I figured you read labels but wanted to mention it just in case. I was shocked to see carageenan on some brands of milk and cream ingredient lists. Another shake my head moment, they don't have to put that crap in there.

The list Donna is referring to, I bet it is that guy/girls food plan for a low histamine/low salt diet that the nutrtionist made up for him/her. It has a lot of fruits listed that you and I were questioning.

Donna, I have eaten some fruits that were listed on some websites as fruits to avoid and then on other websites as fruits that are allowed (i.e. nectarines and peaches, and I did fine with them). I think there is some questions as to what is correct. For the most part all of the lists have several things that are the same, bananas, pineapple, citrus, avocados, wine, fermented products, deli meat, fish, cheese, chocolate, tomato products, etc. and I am staying away from those major offenders that contain naturally occuring histamine or that cause a release of histamine from the mast cells.

I have a new love, sprouted corn tortillas from Fodd For Life. Omg they are good. Ummmm! :lol:

Hi Cecilia ;)

dlp252 Apprentice
Donna, I have eaten some fruits that were listed on some websites as fruits to avoid and then on other websites as fruits that are allowed (i.e. nectarines and peaches, and I did fine with them). I think there is some questions as to what is correct. For the most part all of the lists have several things that are the same, bananas, avocados, wine, fermented products, deli meat, fish, cheese, chocolate etc. and I am staying away from those major offenders that contain naturally occuring histamine or that cause a release of histamine from the mast cells.

I have a new love, sprouted corn tortillas from Fodd For Life. Omg they are good. Ummmm! :lol:

That's the site. I still do eat some of those things you listed, but fortunately not everyday...I think I'll try without them all for a few weeks and see what difference that makes. I'll have to look for those tortillas. :)

VydorScope Proficient
Vincent -- I did see your reply, a few years ago we had a child psychologist refer us to a psychiatrist after she had several sessions with Blake (DS) and they both decided it was what they called a mixed type ADHD with a bit of ODD thrown on top. We explored other avenues as well, but they did not think he was Autistic. (He is my step-son however, and Dr. decided to also reduce gluten intake as I was already on Celiac food intake) and see if it made a difference in his temper (as it does for me).

Daxin, well I hope it helps him, does nto help me. Exerscise and activity does thought.

We have military healthcare also and my DH and I were wondering how they can come up with a diagnosis based on two or three sessions with the kids. Our daughter was referred by her first grade teacher because she thought DD had ADD. The psychiatrist thought she was on the cusp of Asperger's and had ADHD and depression. I think that she might, but how do they know when they don't know her. Do you wonder this? They aren't treating the ADHD so to speak. They're trying to work on her behavior. We're thinking of getting a second opinion, but I don't know. Any thoughts ya'll?

ADHD/AS is a very serious issue, I ALWAYS recomend at least two independent opinions. And try not to tell the second opinion anything the first one said so not to predjuice the decsion.

skbird Contributor
Stephanie,

I love the picture of your kitty.

I haven't checked weather forecasts....any sign of a let up soon?

Thanks! I love my kitty (Benny)... we're having a sort of tragedy here in that the city is taking over the Humane Society - turning it over to the Police Department - and they are going to ship out or euthanize all the pets already there, then no longer have adoptions, only have strays which they'll keep 5 days, then put them down (unless claimed). This makes me very angry - my cat (in the pic) is from the Humane Society, so I see him now as a symbol of what the city is rejecting and I'm pissed.

Of course the heat isn't helping, but it is only 101 today which feels like winter, practically!

Wow, this is a monster thread. It was only in the 90's when I saw it about a week ago, now it's 235 or something???? Never seen the likes of it. :)

Stephanie

jerseyangel Proficient

Gee, I'm sorry that you all are reacting badly to spring water. I was just the opposite! Since I started drinking it exclusively, I've been better. Is the Arrowhead water a spring water or a filtered water? I know that some bottled waters are filtered tap water--I trust the source of Poland Spring, so I stick with that. I guess we all have different tolerances in that department, too :)

AndreaB Contributor
I have a new love, sprouted corn tortillas from Fodd For Life. Omg they are good. Ummmm! :lol:

Yum.

Thanks! I love my kitty (Benny)... we're having a sort of tragedy here in that the city is taking over the Humane Society - turning it over to the Police Department - and they are going to ship out or euthanize all the pets already there, then no longer have adoptions, only have strays which they'll keep 5 days, then put them down (unless claimed). This makes me very angry - my cat (in the pic) is from the Humane Society, so I see him now as a symbol of what the city is rejecting and I'm pissed.

Of course the heat isn't helping, but it is only 101 today which feels like winter, practically!

Wow, this is a monster thread. It was only in the 90's when I saw it about a week ago, now it's 235 or something???? Never seen the likes of it. :)

Stephanie

Stephanie,

That is very irritating of the city. I frequently adopted cats, unfortunately had to take some back because my children weren't treating them very nice. They were too nice to ruin and I figured they'd find another good home. The shelter here is very proactive about adoptions.

We like to gab on this thread. :lol:

Rachel--24 Collaborator
I have a new love, sprouted corn tortillas from Fodd For Life. Omg they are good. Ummmm! :lol:

Darn....I wish I could try those!! I dont think they're organic though...I'm eating alot of corn tortillas but only organic. They probably arent as tasty as what you're eating. <_<

My ultrasound was uneventful...I feel like the alien baby was "awakened" before my appt. though. Well see what the report says. They are gonna compare to the ultrasound from a month or two ago and get back to me.

Julie, do you react to the high histamine foods? My worst reactions ever have been to foods on the really high list. Red wine (one of the worst I've ever had), yogurt, soy yogurt, saurkraut ( only one small bite...major reaction), cheese, pineapple, banana, soymilk, beer, citrus, avocados, those are some of the ones that really affect me. Fermented stuff gives me the worst reaction of all though.

I wonder if anyone knows the answer to this. I react very badly to ghee. I could never figure out why cuz it was organic and casein free yet it would get me really sick. Now I'm wondering how ghee is different from regular butters....is it fermented or anything like that? :unsure:

VydorScope Proficient

Rach, yea infact take the vanilla out, and make it all whipping cream and thats my unflavored icrecream base. Cep I will oftne use less sugar/no sugar when using fruits....

Camille'sBigSister Newbie

I'm really confused about the histamine diet. What to eat and what not to eat? :unsure: Y'all know a bit about my family's history with allergies. Doesn't that indicate that we're overloaded with histamine? And then there's the adrenal thing that was brought into the equation.

What is cortisol? Do you need a prescription for it? I want to try it out on myself, along with the histamine diet, so I can tell my sisters, et al, something positive to try.

Cissie

evie Rookie
I just know sugar is one of the keys for me, but I'm just so darned addicted! Fortunately I like fruit and honey (wonder if Agave is okay) and real maple syrup.

Hoping, hoping, hoping. :lol:

Donna: Thanks so much for your "book report", I printed that off. Lots of information I can use there and seems when I try to read a book or?? I find myself later waking up from a nap, as if that is what I intended or what I needed?? I am also glad for the 'sugar quote', have been using more maple syup & stevia even if having problem liking the stevia, leaves me with an aftertaste if use too much. It is very sweet!! What is agave?

Rachel: hope you get your ice cream recipe worked so you can eat it without being sick at all. Nothing like ice ceam to sooth the tongue !! :)

Has anyone heard from Megan since mid am? She was having a fever then, sounded to me like was un usual time for that. Fevers usually go up toward evening.

Good you are taking your dingo dogs for walks every day, they are big enuf am sure they need the exercise.

We had big dogs, small dogs and in between size dogs. For several years no DOGS. Our neighbors in all directions make up for that. Most have from 2 to 5 each household. Nothing like hound dogs to bay at the full moon or ?? or 00. Just keep the house shut up!! :angry: Our town coucil is far too wishy washy for me, but I am too lazy to go to monthly meetings & protest. :blink:

Of course in Rville we will have NO problems like that am sure. Been away from home much today, hi to all of you!! :):) evie

Guest Robbin

Julie and Donna -thank you so much for the information tonight. I was bummed to hear about sauerkraut-was going to try the fresh to get some of the healthy bacteria rinne had posted about yesterday. Are you bothered by it, rinne?

Rachel-are sweet potatoes still a problem for you? Are they high histamine? I had a bad time of it yesterday and thought it was iced tea, but maybe sweet potatoes? Probably both.

Today I was trying to get lunch together and was so frustrated because I am afraid to eat anything. I got so frustrated I had a little "moment" :( .

VydorScope Proficient

MEGAN UPDATE MEGAN UPDATE

Sorry that I haven't written more today, but I had more time to spend with Cole and did that instead. I'll try to do better.

Megan has had a good day. She got all 3 chest tubes out today. She's still very alert, but no smiles yet. She's on oxygen for now to keep her oxygen saturations up, but that shouldn't be for much longer. Her fever is staying between 99-102. We're keeping a close eye on it. Still no signs of infection. One doctor thinks it may just be a delayed response to being on the bypass machine. She's doing so well otherwise, but she's still going to be in PCCU for at least tonight.

She's tolerating her feeds well and at the same rate as before surgery. She is still gagging some, but maybe not quite as bad, which is good. At least we can address the GI issues once we get all of this behind us.

Her swelling is much better tonight and she's looking much more like herself. Her beautiful eyes are watching everything that goes on, even though she's lying quietly. She doesn't feel like moving much, but she's still a "Nosey Rosey".

Thanks again for all the prayers. It really is miraculous how good she looks after going through so much. Just keep praying for the fever to go down. God Bless!

jenyanderson Newbie

Thanks Vincent. When I gat a chance to sit down with my husband, I'll talk to him about getting a second opinion. We weren't sure on what to do because this is new ground for us. I found out I had AS when my DD got diagnosed and the Dr. said that it wasn't DX-able when I was young enough (?). I value your opinion on the subject. Thanks again.

Jeny

DingoGirl Enthusiast

removed post, TMI and totally off-topic! :blink:

miamia Rookie
I got a headache trying out the spring water too, I guess that makes three of us...and I didn't think it tasted right. :blink:

Rachel, I figured you read labels but wanted to mention it just in case. I was shocked to see carageenan on some brands of milk and cream ingredient lists. Another shake my head moment, they don't have to put that crap in there.

The list Donna is referring to, I bet it is that guy/girls food plan for a low histamine/low salt diet that the nutrtionist made up for him/her. It has a lot of fruits listed that you and I were questioning.

Donna, I have eaten some fruits that were listed on some websites as fruits to avoid and then on other websites as fruits that are allowed (i.e. nectarines and peaches, and I did fine with them). I think there is some questions as to what is correct. For the most part all of the lists have several things that are the same, bananas, pineapple, citrus, avocados, wine, fermented products, deli meat, fish, cheese, chocolate, tomato products, etc. and I am staying away from those major offenders that contain naturally occuring histamine or that cause a release of histamine from the mast cells.

I have a new love, sprouted corn tortillas from Fodd For Life. Omg they are good. Ummmm! :lol:

Hi Cecilia ;)

Julie-

what is the website with the histamine lists?

Those tortillas are really good. I have some in my freezer right now but have been avoiding corn I am thinking to give them a try again though.I don't really think corn was a big problem for me as I have been avoinding it and still really sick.

Miamia

miamia Rookie
Gee, I'm sorry that you all are reacting badly to spring water. I was just the opposite! Since I started drinking it exclusively, I've been better. Is the Arrowhead water a spring water or a filtered water? I know that some bottled waters are filtered tap water--I trust the source of Poland Spring, so I stick with that. I guess we all have different tolerances in that department, too :)

Question - if your boiling water for cooking or something do you use bottled water or tapped?

Miamia

Are you feeling better today. I wish I could say I was but I am still in a really bad place. I can;t believe what a strong reaction I am having - it had to have been the cucumber- Hoe is this possible?

Green12 Enthusiast
Darn....I wish I could try those!! I dont think they're organic though...I'm eating alot of corn tortillas but only organic. They probably arent as tasty as what you're eating. <_<

Rachel, the tortillas are organic! I'm looking at my package right now. Made with Organic Grains, sprouted organic corn. They are so good :D I just steamed a couple and put some shredded chicken on them that I had cooked in the crock pit with sea salt, cumin, and garlic, and rolled them up.

Question - if your boiling water for cooking or something do you use bottled water or tapped?

Miamia

Are you feeling better today. I wish I could say I was but I am still in a really bad place. I can;t believe what a strong reaction I am having - it had to have been the cucumber- Hoe is this possible?

I always use my filtered water to cook with.

So sorry to hear you are in a bad place. :( I hope you feel better soon.

I wonder if anyone knows the answer to this. I react very badly to ghee. I could never figure out why cuz it was organic and casein free yet it would get me really sick. Now I'm wondering how ghee is different from regular butters....is it fermented or anything like that? :unsure:

oh, ghee is butter with the milk solids removed, so its the fat part that is left over. And I guess it is simmered to slowly release all of the moisture so it can be stored for a long time.

I don't think there is fermentation involved at all. Ghee never set well with me, not sure why.

Julie-

what is the website with the histamine lists?

Those tortillas are really good. I have some in my freezer right now but have been avoiding corn I am thinking to give them a try again though.I don't really think corn was a big problem for me as I have been avoinding it and still really sick.

Miamia

This is the histamine list I am following: (scroll down past the chart to where it reads "Histamine Restricted Diet for Control of Urticaria/Angioedema )

Open Original Shared Link

Another one is: (this is the one Donna and I were discussing, click on the picture to see the list of foods on this diet, though we question some of the fruits, and also the breads aren't obviously allowed because of gluten)

Open Original Shared Link

There are many other histamine lists if you do a search for "histamine restricted diets", or "Low histamine diets"

I am trying out the first one since I have angioedema.

jerseyangel Proficient
Question - if your boiling water for cooking or something do you use bottled water or tapped?

Miamia

Are you feeling better today. I wish I could say I was but I am still in a really bad place. I can;t believe what a strong reaction I am having - it had to have been the cucumber- Hoe is this possible?

If I'm boiling something, I use tap water. For everything else, for instance mixing up my Vance's, I use the spring water. I never use the filtered water from the fridge anymore. That kept me low-level-sick for months, I can see now.

I am better today, thanks. I can't believe a cucumber made you so sick--and for this long. I'm at a loss there. Hope tomorrow is better :)

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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