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smjohn

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smjohn Apprentice
smjohn
Posted

I have had a positive tTg but negative endo biopsy. I have the HLA DRB1 (DR4) gene. I have many of the symptoms and a "dermatitis" type rash on my arms,legs and buttocks.

I would like to see if I get relief from the celiac diet. I am just overwhelmed and not sure how to get started. Any help would be appreciated. Thanks!!

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Carriefaith Enthusiast
Carriefaith
Posted

One of the first things I did was buy gluten free cookbooks. These books have great recipes and are very useful.

Gluten free products lists are also very useful. Here are a few:

https://www.celiac.com/st_main.html?p_catid...-29105457116.1c

I have a few more lists and if you are interested, I can e-mail them to you.

skoki-mom Explorer
skoki-mom
Posted

Start simple! I started basically by elimination and stuck with the easy natural stuff.... like a hard boiled egg for breakfast with juice and fruit or something. Fresh fruits and veggies, baked or boiled potatoes, unseasoned meats, etc. You can do a *lot* with stuff like that is still the staple of my diet. Then, gradually search on-line and in books for gluten-free products and learn how to read labels. If in doubt, I just tend to avoid it. I have sent a lot of e-mails to a lot of companies and have had quite a bit of success with replies. I have been surprised how much we can still have, but you do have to be careful and become a savvy shopper. Eating out is the biggest challenge. I never thought I'd say this, but I'm getting sick of French fries. Seems all I grab is fries from the places I have questioned and know to be safe. Good luck, I hope you will feel better!

Jnkmnky Collaborator
Jnkmnky
Posted

I posted some food choices in your other post. You can find all you need in a regular store. I don't cook or bake from scratch other than Chebe which is as difficult as Bisquick. If you like cooking, there are many good cooks here who will tell you their favorite bread recipes, etc. If not, WholeFoods has many great frozen products that will make up for what you lose going gluten free. If there's a specific food you're wondering about---- Post the question and someone will respond quickly. Someone's always on line here ready to tell you if your favorite brand of peanut butter is gluten free! :lol:

RiceGuy Collaborator
RiceGuy
Posted

I started with the gluten-free things which I was already eating. It does get easier as you go. I'm still finding stuff I can have, and yet haven't ever tried. I'm also still finding no-no's along the way, so be wary about that too. It can help to keep a food diary, especially at first, so you can more easily track down what helps and what hurts.

The suggestion to read labels is always good, and you should watch for changes to a product too. While that shouldn't apply to fresh whole foods like vegetables and fruit, it does to just about anything prepackaged.

Here are some links to gluten-free recipe ideas:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And of course as has been stated, this forum is a great help. I'm learning quite a lot. You'll find many recipes here as well. Feel free to post your questions, and don't forget the search thingy too.

smjohn Apprentice
smjohn
Posted
  • Author

Thank you! I know I have to be careful of not cross-contaminating. I can keep the same foods in the same area as long as my gluten free products are sealed. Right?

I can still prepare gluten containing products for my kids(who are not allergic). I mean, I can prapare the food as long as it's not ingested. I can still touch the food without having a reaction, right?

RiceGuy Collaborator
RiceGuy
Posted
Thank you! I know I have to be careful of not cross-contaminating. I can keep the same foods in the same area as long as my gluten free products are sealed. Right?

I can still prepare gluten containing products for my kids(who are not allergic). I mean, I can prapare the food as long as it's not ingested. I can still touch the food without having a reaction, right?

Sealed containers seem like they would do the job. I'd have to guess as long as you don't ever open both at once, or one after the other without washing the counters/table/hands/etc.

You actually might get skin reactions. I've seen quite a few posts about having to switch shampoo brands to a gluten-free product, and stuff like makeup too. I don't know if the hands would be so sensitive, but if you happened to touch you face after touching wheat, who knows...

Remember that gluten intolerance is not an allergy. It's an immune response. It's also hereditary, so your children might have it or develope it at some point. No symptoms now doesn't mean they don't or won't.

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Carriefaith Enthusiast
Carriefaith
Posted
I can still prepare gluten containing products for my kids(who are not allergic).
Making sandwiches, pasta, or toast should be fine; however, I wouldn't recommend baking with wheat/rye/barely flour. I can get reactions from inhaling flour.
jerseyangel Proficient
jerseyangel
Posted

I make sandwitches for my husband and son and there are a few other times when I touch bread or something with gluten in it. I just make sure I wash my hands every time and am fine. We always use a plate or something between the bread and the counter. Its a matter of common sense, really. And it becomes second nature quickly. The problem does not lie with the bread or whatever touching the skin (unless you are allergic) but with the possibility of accidently ingesting it. The reason we need to be careful with the personal care products is that many times, they can find their way into our mouths (and they do, believe me!). I agree with Carrie--I don't use wheat flour anymore. I don't want to inhale it and I don't want it flying around the kitchen--wherever it settles it contaminates. I have a separate toaster, have replaced the pans (switched to all stainless steel), tossed wooden spoons, collander etc. I'm 6 months into it now and I rarely, if ever, get glutened in my own house anymore--away from home is a whole other story :angry:

Jnkmnky Collaborator
Jnkmnky
Posted

Skin reactions or DH are rare. The problem with a non DH celiac and creams or shampoos is the accidental ingestion. I've rubbed my celiac kid down with wheaty creams *not knowing they had wheat* and he had no reaction. The thing is, I was putting it on his dry elbows and he wasn't licking them. If you have celiac disease and use a cream or shampoo with wheat, you may find it getting into your mouth. You don't have to be skin sensitive to wheat just because you have Celiac.

We had a "mixed" kitchen for the first four years of my son's dx. He never got sick. It's a matter of separate utensils for stiring noodles, separate colander, no non-stick pans... keeping bread gluten-free or gfull on a plate.... I used a toaster oven for the celiac disease kid because that way I could make his mini pizzas in it as well. Cheaper than heating up an entire oven for one little piece of bread with cheese and sauce.

Rachel--24 Collaborator
Rachel--24
Posted
no non-stick pans...

What is the deal with that? All my pots and pans are non-stick. Is this wrong? :unsure:

tarnalberry Community Regular
tarnalberry
Posted
I have had a positive tTg but negative endo biopsy. I have the HLA DRB1 (DR4) gene. I have many of the symptoms and a "dermatitis" type rash on my arms,legs and buttocks.

I would like to see if I get relief from the celiac diet. I am just overwhelmed and not sure how to get started. Any help would be appreciated. Thanks!!

Start simply. Stick to naturally gluten-free foods that you already eat, and don't worry too much about replacing old favorites yet. Produce and meats (without any modifications to them) are naturally gluten-free, and healthy, for your body as it adjusts to the diet and heals.

Carriefaith Enthusiast
Carriefaith
Posted
What is the deal with that? All my pots and pans are non-stick. Is this wrong?
I think that using the same pots and pans is fine as long as you clean them really well. I personally don't use pans that have scratches in them, unless the pan was only used for gluten free cooking.
Jnkmnky Collaborator
Jnkmnky
Posted
What is the deal with that? All my pots and pans are non-stick. Is this wrong? :unsure:

First of all, the maker of all that teflon is under scrutiny for the chemicals used in making it's product. There are lawsuits pending, the poor people who lived near the plant that produced the teflon are undergoing studies to see if the chemicals in the water around the plant poisoned them... Teflon is poison. Google dupont and teflon and see what the status of this issue is. It's going on right now. Secondly... to do with gluten. The small scratches in the teflon make room for small particles of previously cooked gluten to hide. But the heck with the gluten... the Chemicals used to make Teflon should scare you more.

jenvan Collaborator
jenvan
Posted

Print these safe and forbidden lists to help with shopping and choosing products.

https://www.celiac.com/st_main.html?p_catid=12

I also recommend finding a local support group. Let me know if you need help or ideas doing that.

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    • trents
      Bob red mill gluten free oats

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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