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Newly Diagnosed

JuliaE

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JuliaE Newbie
JuliaE
Posted

Hi, everyone. About three weeks ago I was diagnosed with sprue after having an upper and lower endoscopy. A bit of my history: I'm 22, and three months ago my total iron level was 14 (it's supposed to be 35-150, or so) which is why I had the endoscopy. From reading these boards, I believe that the combination of my hypocondria (I only went to the doctor originally because I had a headache), my overly conscientious doctor (my hemoglobin and hematicrit levels only indicated mild anemia), and my father's history (lymphoma was found after presenting with anemia, which is the only reason the GI felt the endoscopy and biopsy during endoscopy were necessary) led to a correct diagnosis much sooner than most. Going by when I really began losing a significant amount of weight (I lost about 25 pounds since November, 15 of it in the past three months), I think the celiac couldn't have been triggered more than a year ago.

My question is, do you become more gluten intolerant after going on a gluten-free diet? At this point, I never really felt sick, other than from my severely low iron, and as soon as my doctor put me on a high dose of iron I felt better. Right now I don't feel like eating something that may have been contaminated with gluten, but doesn't actually contain gluten, is going to effect me. Will staying completely gluten-free make me more sensitive?

Also, I'm a vegetarian, and the majority of my protein used to come from fake meat products, but those all contain wheat. Are there any gluten-free brands of TVP?

Thanks,

Julia

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GFBetsy Rookie
GFBetsy
Posted

Dont' have a lot of answers to those questions, but wanted to say Welcome! There are lots of threads about vegetarianism on the board . .. perhaps they might have some of the information you're looking for!

Best Wishes!

mouse Enthusiast
mouse
Posted

I also wanted to welcome you to the forum. You cannot just go a little gluten-free, but must go gluten-free all the way, which means to try and not have any cross contamination. Any amount of gluten will keep your small intestine from completely healing and could impact your health in some powerful ways, further on in your life.

Also, yes, after you have been gluten-free for awhile, you will notice that the smallest amount will give you problems. Some of us react within minutes (which makes it easier to finger out what triggered it) and some react in about 3 days. Everyones reaction can be a little bit different. I forgot - there are some people who have no reactions, but the damage is going on none the less.

Ursa Major Collaborator
Ursa Major
Posted

Hi Julia, and welcome to this board. Yes, it appears that after being gluten-free for a while, that you get more sensitive to gluten. At least your reactions might get stronger and more obvious.

It is actually VERY important to avoid cross contamination as much as you can, as you might never heal completely if you don't, even if you don't get obvious symptoms from it.

Make sure you also check all your personal care products (shampoo, conditioner, lipstick, soap, lotions etc.) for hidden glutens. If it says wheat germ oil, oat bran or barley extract, don't use it but replace it with a gluten-free product. Also, a lot of vitamin E is made from wheat germ oil.

I personally don't feel a vegetarian diet is healthy, and will therefore leave answering that question to others here. And as Betsy said, there are several threads going on that subject already. To find those, put into the search engine 'vegetarian' or something like that (you'll find it on the right upper corner when coming into the forum, not when you're in a specific one), and should find lots of info.

mommida Enthusiast
mommida
Posted

Celiac can be different for everyone. You may become more sensitive.

It may seem like paranoia to go through and eliminate gluten from products that aren't intended to go in or near your mouth, but take the advice from from very sensitive people and get rid of lotions and shampoos. :D

Amy's products have some vegatarian meals that ingredients are gluten free but watch out for CC. The company is starting to have some dedicated gluten free lines check out their website. ;)

L.

lorka150 Collaborator
lorka150
Posted

Bob's Red Mill TVP is made in the gluten-free facility. It is safe.

AndreaB Contributor
AndreaB
Posted

I just wanted to say welcome! :D

I second what everyone else has said so far.

I am a former vegan. Left the diet due to my intolerances so I can't really answer your question on vegetarianism. There have been numerous discussions though. I do have a thread I started in the recipe section. Gluten, dairy, egg and mostly soy free stuff, mainly "cheese", mayo....those types of things.

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  • Recent Activity

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      High DGP-A with normal IGA

      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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @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
      Finding gluten free ingredients

      By captaincrab55 · Posted

      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
      High DGP-A with normal IGA

      By rei.b · Posted

      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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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
      High DGP-A with normal IGA

      By rei.b · Posted

      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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