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And So It Begins


LadyCeliac

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LadyCeliac Newbie

Hi!

I'm new to this...2 weeks since my blood diagnosis. I really thought, "well, just clean out the kitchen and pantry and go gluten-free...sure, it'll be tough, but you can do this."

Famous last words.

I'm overwhelmed and feel pretty alone. My doctor didn't just cut out gluten, but soy, dairy, nuts, nut flours, corn and oats because of Hashimoto's thyroid and latex allergies (no avocado, celery, fig, kiwi, etc).

Needless to say, it's been rough. I learned the hard way that girl cannot live on rice and veggies alone. My blood sugars bottomed out and my boss sent me home. Protein is my friend! That's helped. I eat throughout the day. I had gained weight, which is what prompted the doctor's visit, and left wondering what eating throughout the day will do for my ever-expanding waist-line.

I thought that after working to get gluten out, I'd notice at least a little difference. Instead, I feel significantly worse. I'm sleeping about 12 hours a day, which is really starting to impact work/performance, and now my hair is thinning.

Didn't know where else to turn. :(

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shadowicewolf Proficient

Dear, what are you eating? Perhaps you can give us a rundown on what you eat everyday and maybe we can, in turn, point you in a good direction.

It is tough. While my symptoms pretty much cleared up a week or so afterwards it took months to get to what i'd discribe as normal. Your body needs to heal and it does take time.

It is generally advised for those who are newly dx'd to stick to a whole foods diet. One of my favorite meals is to make a soup. I take some meat (normally beef) brown it in a big pot, build up a crust at the bottom, then add water, then whatever veggies tickle my fancy that day, a little bit of salt and pepper and sometimes some brown sugar if i want a little bit of a wang, and sometimes serve it with a side of rice.

Eating smaller meals throughout the day instead of three big ones is better for ya anyway :)

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Lisa Mentor

Hi!

I'm new to this...2 weeks since my blood diagnosis. I really thought, "well, just clean out the kitchen and pantry and go gluten-free...sure, it'll be tough, but you can do this."

Famous last words.

I'm overwhelmed and feel pretty alone. My doctor didn't just cut out gluten, but soy, dairy, nuts, nut flours, corn and oats because of Hashimoto's thyroid and latex allergies (no avocado, celery, fig, kiwi, etc).

As you should be overwhelmed. It is over whelming! But, can be easily fixed.

May I ask what kind of doctor diagnosed you? I'm not a doctor, but I would assume that your doctor would recommend removing gluten and dairy from your diet first. See how that goes for a month or two and if issues continue, go soy free....a month or two. Well, you get my drift.

You may have been dumped on a bit heavily. And I am not familiar with any recommendations for Hashimoto's, but many others here have.

And a great welcome! :D

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LadyCeliac Newbie

Right now, I'm eating rice chex with rice milk for breakfast. I usually have a mid morning snack of veggies or a piece of fruit with a slice of cheese (which I guess I have to give up now that he added the no-dairy piece). For lunch, I try to eat the leftovers from the dinner the night before. Steak or porkchop with veggies and applesauce or beans and rice or veggie stir fry (in fresh ginger and garlic). For dinner, I eat the same kinds of things. Thinking about trying quinoa again, but my doctor warned that cross contamination is an issue and that a lot of people with gluten issues find it acts the same way as gluten.

For snacks, I'll do a rice cake with homemade black bean dip, fruits and veggies.

My doctor is a GI doctor. I told him that, after a positive blood test, I'd try the diet. I don't have good insurance, so doing the endoscopy and biopsy would cost me a small fortune. He's known in the area for doing really good work.

My understanding is that the soy, nuts, and other restrictions contribute to the thyroid issues. Good heavens, I think that's what I remember reading. I know that my thyroid is functioning normally, but the gluten is preventing me from receiving the benefits.

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Lisa Mentor

My doctor is a GI doctor. I told him that, after a positive blood test, I'd try the diet. I don't have good insurance, so doing the endoscopy and biopsy would cost me a small fortune. He's known in the area for doing really good work.

If you have a positive blood test, you have Celiac. And there is no need to an endoscopy exam.

How diligent are you on the diet? It can be pretty complex. "And many people, I have talked to, don't take it very seriously."

They're stupid people, don't be one. B)

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shadowicewolf Proficient

there are a lot of celiacs (myself included) that can handle quinoa just fine. Really, its a pop shot. Some people react to it because they are intolerent to it (not a cc thing).

I can no longer handle oats as it gives me a belly ache, yet there are some who can have it just fine.

See? Its one of those things where you have to try it yourself to see what happens.

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Really good scratcher Newbie

So what next? I am trying to cut out gluten; I am new to the iodine thing, so want to cut out Iodine, but wow! Gluten and Iodine are in so many standard things!

I can eat meat--plainly grown and raised. Good I am a carnivore, so that is good. I also love almost all fruits and vegetables. Sigh, huge sigh of relief!

Grains. Still puzzled. Rice is good. Quinoa is good. Seems about it. Not a problem.

I am a baker. Not professionally of course, but my family sure loves it when I bake! I guess I need to find out what grains I can use to bake with! After that, I am just open to see what is available to Gluten Intolerant folks such as I am. Suggestions, especially websites and or LISTS of products that are safe would be so beneficial!

Thanks for all the support!

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Takala Enthusiast

Oh, we have to fix your breakfast of 'rice- rice and sugar' first, then. No wonder you're near passing out. :o Can you do eggs and vegetables ? Pumpkin custard made with non dairy liquid ? Bacon ?

I don't know about all those restrictions. Yes on ditching the potential triggers for latex, and maybe most soy, (some people can put up w/ small amounts of soy lecithin or soy oil) but you may be able to add back in non lactose dairy such as yogurt (you can use yogurt thinned with water on cereal) and cheese. Do you really have a corn problem or just a cross contaminated corn problem ? One way to tell is to try eating a freshly shucked & cooked ear of sweet corn, if you don't have an obvious allergy to it. It's a real challenge to find corn flours in the USA which are not screwed up. Likewise, do you know if you are an oat reactor and must avoid all potential oat cross contamination from things that are not containing oats ? This means you should avoid the Bob's Red Mill products.

Do you know that some brands of Quinoa are less likely to be screwed up than others, and you want to look for the Kosher certified ones like Ancient Harvest ? Do you have to avoid all nuts, or could you find something that doesn't have potential chestnut and hazelnut cross contamination ? Open Original Shared Link

What about oils ? Can you do olive oil, coconut oil ? What about things baked like sweet potatoes ?

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LadyCeliac Newbie

Thank you for talking with me, everyone...this is all helpful! It's nice to know I'm not alone. I've spent a lot of time this weekend reading many threads on here and, while the amount of info is overwhelming, it's all good stuff.

I can do eggs for breakfast. Honestly, some of it as the convenience piece and the doctor saying it was safe. I think these first two weeks have been desperate for all things safe. Because of the fatigue, I've been getting up for work later than normal, so I often take dry cereal in the car while I'm driving.

My doctor is known for being heavy on dietary restrictions, but my understanding is that the doctor's success in working with patients is great. I'm on the fence. I feel very overwhelmed. The group the doctor practices with offers classes and I'm scheduled to take them, but they just feel 3 weeks AFTER diagnosis. I'd like to think I'll feel less overwhelmed. The doctor's way of presenting information is a bit overwhelming.

I'm on a TON of supplements.

In regards to the questions about being sensitive to corn, oats, etc....I don't actually know how I react yet. I'm still dealing with A LOT of bloating and distention. It's driving me crazy. I'd like to think there will come a time where I will know if I'm reacting. I'm keeping a thorough food log and including how I felt, diarrhea/constipation, bloating, energy level, etc. I figure if the doctor is going to be that restrictive, I'm going to be that detailed. :D

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GottaSki Mentor

I'm keeping a thorough food log and including how I felt, diarrhea/constipation, bloating, energy level, etc. I figure if the doctor is going to be that restrictive, I'm going to be that detailed. :D

Welcome LadyCeliac!

Sounds like a very good plan - took me a very long time to figure that one out ;)

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Pauliewog Contributor

More things to read, but I think you'd be a prime candidate to follow a "primal" diet. Check out Marksdailyapple.com Essentially you eat proteins and veggies. It is actually rather easy.

Six months after going gluten free I hadn't lost any weight and was just feeling so-so and hungry a lot. Like you, I ate a lot of rice/rice products. I guess I thought I was replacing my wheat. Through this forum I read about primal diets. I had already given up wheaty carbs so I figured I may as well try it. I cut out all the other carbs and sugars. I lost 10 pounds in about a month without trying! And, I started to feel better. I was full and felt good for once. The hardest part for me was eating meats because I have been vegetarian for many years.

As an example, this morning I had two eggs mixed with some green veggies and mushrooms for breakfast. Lunch was chicken with raw carrots and cucumber. Dinner will be chicken again with salad (busy day so I just cooked a bunch of chicken in the morning). I try to alternate different meats each day but stick to the eggs for breakfast. Give it a try. You might like it and start to have more energy.

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GottaSki Mentor

Pauliewog is right - Paleo is a very good way to start when there are multiple restrictions plus there are a lot of easy to find recipes.

Wanted to add -- make sure you double check your supplements for gluten, soy and corn - corn is a tough one to get out of supplements.

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nvsmom Community Regular

(((Hugs))) :(

My first 2 weeks eating gluten-free were very difficult. I went through a withdrawl of sorts and felt quite unwell and incredibly cranky. That could have contributed to your recent down hill slide.

Are your blood levels and vitamins ok? Were they tested when you were diagnosed? Many celiacs have a very hard time getting enough B12, D, iron, and calcium because of the damage in their gut; even if they do take a tonne of supplements. These can all affect your energy levels and overall health. If they weren't checked, you may want to request that it be done.

Do you have Hashimoto's thyroiditis? You mentioned your thyroid was functioning normally so I was unsure. There are some foods that can aggravate Hashimoto's and goiters, but I don't think it's an issue for everyone (I'm not a doctor though). I have Hashimoto's but no goiter at all. I avoid soy because it is the worst goiterogenic food. Some veggoies like spinach and carrots are also goiterogenic but are mjuch less so if cooked. I think almonds were the only goiterogenic nut... But I do eat spinach, carrots and almonds very regularly for taste and other health benefits.

If you do have Hashimoto's are you being treated with T4 and possibly T3? How are your Free T4 and T3 labs? Since so many Hashimotos and celiac symptoms overlap, you'll want to make sure you are being treated for it. It could be at the root of your fatigue, hair loss and fog.

After being gluten-free for about 2 months my body went through some type of autoimmune attack that lasted about a month. I'm guessing it was from my undertreated thyroiditis but I am also looking into connective tissue AI diseases. I ran a slight fever (for me, that's almost hitting 98F LOL), ached in an arthritic like way, lost hair at a rate that my husband even noticed, and was so tired I became nervous to drive my children places. It's mostly gone now, after about a month and a half, but it was scarey while it happened so I understand some of your anxiety...

Give the diet time (it takes a while for improvements), treat your other problems (thyroid) and keep up your food and symptom log (good idea). Others advised me to be very descriptive when writing about symptoms. For example, don't just write "I'm tired" but mention how you fell asleep in the convenience store parking lot while waiting for your spouse to buy milk. KWIM? When my fingers hurt, I mention how I have a hard time with my toothbrush so I can remember how it impacted my life when I see the doctor again.

Best wishes. I hope you feel better soon.

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june27 Apprentice

Welcome!

It definitely is overwhelming to have to overhaul your diet like this. It takes some getting used to, but it does get easier with time.

If you don't want to give up all grains, and are feeling adventurous, there are a few gluten-free ones out there that are not mainstream, but are gaining in popularity:

1. buckwheat - I'm not a huge fan of this by itself, but in soup, stir-fry (with some sort of sauce), or with milk/fruits/maple syrup for breakfast, it works just fine.

2. amaranth - this one is a grain unlike no other. I usually cook it with onions to perk it up a bit, but might try adding other veggies next time as well. it sticks together more than rice or quinoa, so i am not sure how well it would work in a soup. It is not one of my staples, but it is great when I need to mix things up a bit.

3. sorghum - I have bought this, but haven't tried it yet. The one that I bought requires soaking ahead of time (like beans), and I am just not that organized

Another breakfast option if you want eggs is to make a frittata. you can put whatever meats/veggies you want to mix it up each time, and you can eat it on the run (either take to work to microwave, or can eat cold like a slice of pizza in the car).

I am also a big fan of home-made soup. You can cook it over the weekend, and have lunch made for the week. I do similar things with crock-pot dishes - make a big pot over the weekend and eat all week. It is kind of nice to not have to worry about cooking something every night of the week.

Good Luck! The first months are filled with ups and downs, but over time it does get better...

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LadyCeliac Newbie

To answer more of your questions you all asked:

Yes, I have been diagnosed with Hashimoto Thyroiditis. He isn't putting me on synthroid because he said my thyroid is actually functioning fine, I'm just not getting the benefit because the gluten is clogging it up.

At the time of my diagnosis, they took 16 vials of blood and tested for EVERYTHING, including heavy metals. I did have elevations of Copper and Selenium. My thyroid panels came back within range, but he feels gluten is blocking me from getting it.

I'm on a daily regimen of Vitamin D, daily vitamin, Calcium/Magnesium, Fish oil, B Complex time release and cinnamon bark--taking supplements 4x day.

My doctor will recheck all blood work in 2 months after I get the known gluten sources out and have had time for supplements to work.

I've noticed I'm lethargic through the day and can't sleep at night. Prior to diagnosis, I just felt tired all the time.

My doctor doesn't want me doing buckwheat, amaranth, or sorghums as he feels they can act like gluten and cause problems. Yeah...I know...the list dwindles as to what I can eat.

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KikiB Explorer

I can do eggs for breakfast. Honestly, some of it as the convenience piece and the doctor saying it was safe. I think these first two weeks have been desperate for all things safe. Because of the fatigue, I've been getting up for work later than normal, so I often take dry cereal in the car while I'm driving.

I make scrambled eggs in the microwave at work when I get in. First melt butter into a bowl. Then add two eggs, mixed. Cook on high for 30 seconds. Stir well, cook for another 30 seconds. They come out very fluffy.

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Gemini Experienced

Right now, I'm eating rice chex with rice milk for breakfast. I usually have a mid morning snack of veggies or a piece of fruit with a slice of cheese (which I guess I have to give up now that he added the no-dairy piece). For lunch, I try to eat the leftovers from the dinner the night before. Steak or porkchop with veggies and applesauce or beans and rice or veggie stir fry (in fresh ginger and garlic). For dinner, I eat the same kinds of things. Thinking about trying quinoa again, but my doctor warned that cross contamination is an issue and that a lot of people with gluten issues find it acts the same way as gluten.

For snacks, I'll do a rice cake with homemade black bean dip, fruits and veggies.

My doctor is a GI doctor. I told him that, after a positive blood test, I'd try the diet. I don't have good insurance, so doing the endoscopy and biopsy would cost me a small fortune. He's known in the area for doing really good work.

My understanding is that the soy, nuts, and other restrictions contribute to the thyroid issues. Good heavens, I think that's what I remember reading. I know that my thyroid is functioning normally, but the gluten is preventing me from receiving the benefits.

LadyCeliac.....I also have Hashi's and Celiac and the information your doctor gave you about cutting so many foods out because of your thyroid issues is horse-pucky! Sorry to say so but he is starving you to death for no good reason. If you have been diagnosed with Hashi's, it is because of the Celiac and not what you eating, as far as the other foods are concerned.

My thyroid antibodies were through the roof, 1200 to be exact, and I brought them down to the normal range by following a strict gluten-free diet and going dairy lite. I can tolerate a small amount of dairy but not large hits, like milk. Many Celiacs have a problem with dairy but that doesn't mean you cannot have it yourself. Do not cut out so many foods all at once as you'll never figure out what ones do bother you. If you do have Hashi's, that will require life long thyroid hormone replacement...food is not going to cure Hashi's.

I would seriously consider a new doctor. If you have any specific questions, ask away! We are here to help.

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Gemini Experienced
Yes, I have been diagnosed with Hashimoto Thyroiditis. He isn't putting me on synthroid because he said my thyroid is actually functioning fine, I'm just not getting the benefit because the gluten is clogging it up.

This is so ridiculous, it's scary to think he is practicing medicine. :o

At the time of my diagnosis, they took 16 vials of blood and tested for EVERYTHING, including heavy metals. I did have elevations of Copper and Selenium. My thyroid panels came back within range, but he feels gluten is blocking me from getting it.

How did he diagnose you with Hashi's if your panel came back within range? That makes no sense to me. :huh:

I'm on a daily regimen of Vitamin D, daily vitamin, Calcium/Magnesium, Fish oil, B Complex time release and cinnamon bark--taking supplements 4x day.

My doctor will recheck all blood work in 2 months after I get the known gluten sources out and have had time for supplements to work.

Two months is not nearly enough time to start to recover from Celiac and possible Hashi's...which will not get better on it's own. You need to be taking thyroid replacement hormone for this. Most people have repeat testing for Celiac after 1 year...no sooner than 6 months.

I've noticed I'm lethargic through the day and can't sleep at night. Prior to diagnosis, I just felt tired all the time.

My doctor doesn't want me doing buckwheat, amaranth, or sorghums as he feels they can act like gluten and cause problems. Yeah...I know...the list dwindles as to what I can eat.

Again, I urge you to find someone else to see because his information is flat out incorrect. Fatigue can be caused by either Celiac, Hashi's or both. It takes a long time to recover from either and I don't think that's going to happen for you, judging by what this doctor is doing. You won't be eating enough to recover well. I'm sure he sold you all those supplements? <_<

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LadyCeliac Newbie

I'm honestly very confused about the Hashimoto's and how he concluded it. I know my Thyroid panels were within normal range. My internal medicine doctor had done the panel 3x/4yrs because of my symptoms and was fairly surprised when all the results always came in right in the middle of the road...not even on a high or low end of normal.

The doctor emailed me over the weekend when I asked about synthroid and just insisted that my thyroid was working fine, but blocked by gluten.

I just looked at all my results and here is what it said:

  • T4 TOTAL THYROXIN: 12.7 (H)
  • T3 TOTAL (TRIIODGHYRONINE): 1.94 (H)

So, I'm really confused.

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tom Contributor

...

Do not cut out so many foods all at once as you'll never figure out what ones do bother you.

...

That sounds backwards to me.

Cutting out enough to find what *doesn't* bother you, what you can safely eat every day is very important imho.

Then you figure out which bother you by adding one at a time.

Subtracting one at a time to figure out what bothers you can not only take far longer, but can also too easily lead to false conclusions based on non-causal correlations.

(e.g. I felt much better on Sunday & haven't had cauliflower for 3 days)

It may not be enjoyable, but starting w/ a very limited diet & keeping a food/symptom journal can be extremely & irreplaceably valuable.

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LadyCeliac Newbie

Then you figure out which bother you by adding one at a time.

Subtracting one at a time to figure out what bothers you can not only take far longer, but can also too easily lead to false conclusions based on non-causal correlations.

(e.g. I felt much better on Sunday & haven't had cauliflower for 3 days)

Tom, you worded my doctor's objective well. Far better than what I was doing. I think he believes corn & oats very well may be able to go back into my diet as well as dairy, but is wanting to get my gut healed up before introducing potentially reactive things.

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Gemini Experienced

That sounds backwards to me.

Cutting out enough to find what *doesn't* bother you, what you can safely eat every day is very important imho.

Then you figure out which bother you by adding one at a time.

Subtracting one at a time to figure out what bothers you can not only take far longer, but can also too easily lead to false conclusions based on non-causal correlations.

(e.g. I felt much better on Sunday & haven't had cauliflower for 3 days)

It may not be enjoyable, but starting w/ a very limited diet & keeping a food/symptom journal can be extremely & irreplaceably valuable.

Ah...the ever questioning Tom!!

Food allergies and intolerances can be figured a couple of different ways. You can either eat spartan and add foods back in or

if you have been diagnosed with Celiac or another major allergy, cut that out and see how you feel. Many, many people do fine that way and discover they have no additional problems. That way, you are not deprived of too many nutrients that you may not be allergic to. Why would anyone cut out food that may not be causing a problem and limit your diet when you are trying to heal from Celiac Disease? This doctor has her cutting out many foods that are nutritionally dense and are not going to be a problem for the thyroid issue she may not have. When a person is malnourished, it is quite stupid to ask them to cut out major food groups that offer sound nutrition.

I felt fine after going gluten-free for 2 years....in fact,it was the best I ever felt in my whole life. Then, I noticed problems and cut dairy out, because that's the next logical step for a Celiac. It was the dairy and 7 1/2 years later, dairy is still a problem. As long as I don't ingest a big hit of dairy, I feel great. And we all know that those who are reacting to many foods may be in the process of healing and will react for awhile OR, they have multiple food intolerances....then the food journal can be useful. Why make things harder than they have to be? You are free to figure things out whatever way you want but it is not always necessary to go spartan to figure out a problem.

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Gemini Experienced

I'm honestly very confused about the Hashimoto's and how he concluded it. I know my Thyroid panels were within normal range. My internal medicine doctor had done the panel 3x/4yrs because of my symptoms and was fairly surprised when all the results always came in right in the middle of the road...not even on a high or low end of normal.

The doctor emailed me over the weekend when I asked about synthroid and just insisted that my thyroid was working fine, but blocked by gluten.

I just looked at all my results and here is what it said:

  • T4 TOTAL THYROXIN: 12.7 (H)
  • T3 TOTAL (TRIIODGHYRONINE): 1.94 (H)

So, I'm really confused.

Can you post the reference ranges for your thyroid testing from the lab report? Plus, all the thyroid tests they performed?

That would be extremely helpful!

Yes, this can all be so confusing but there are many thyroid veterans on here who can be of great help. I have been treating Hashi's for 20 years so know a bit about that. Gluten will definitely aggravate an autoimmune thyroid problem but it would show in your numbers. You also have to do the thyroid antibody testing, usually included in a full panel, to diagnose Hashi's.

Please post whatever you can and we will try to figure this out!

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LadyCeliac Newbie

Can you post the reference ranges for your thyroid testing from the lab report? Plus, all the thyroid tests they performed?

That would be extremely helpful!

Yes, this can all be so confusing but there are many thyroid veterans on here who can be of great help. I have been treating Hashi's for 20 years so know a bit about that. Gluten will definitely aggravate an autoimmune thyroid problem but it would show in your numbers. You also have to do the thyroid antibody testing, usually included in a full panel, to diagnose Hashi's.

Please post whatever you can and we will try to figure this out!

Here are my thyroid tests and results:

T4 TOTAL THYROXIN: 12.7 (H)

T UPTAKE: 0.75

FREE THYROXIN INDEX: 9.5

TSH, HIGH-SENSITIVITY: 2.978

T4 FREE: 1.31

T3 TOTAL (TRIIODGHYRONINE): 1.94 (H)

MICROSOMAL AB (ANTI-TPO AB): 18.3

I'm not sure what they all mean :(

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GottaSki Mentor

I happen to agree with both Gemini and Tom!

Giving the removal of gluten an opportunity to remedy all symptoms associated with Celiac Disease for several months makes sense and will likely reduce stress in an already stressful time.

After several months if symptoms are not improving I believe removing most possible intolerances and then adding them back in singularly is the best way to determine intolerance and this is why:

Upon removing gluten I had improvement in digestive symptoms over the first months, but all other symptoms - fatigue, pain, brain fog and many, many more become much worse. I kept a detailed food log for well over a year while I tried removing both individual foods and groups of foods with very few definitive reactions over that time. When I finally reduced my foods to very basic meat, selected vegies and fruits I was finally able to determine very clear reactions as I trialed each food item individually.

Do I recommend removing so many foods when first diagnosed with Celiac Disease - NO. I believe strongly that the newly diagnosed should remove gluten first and possible dairy if it is an obvious problem as is the case with many celiacs. If symptoms don't improve or worsen I think going the strictest route of elimination diets is very helpful in determining the problem foods and is far less frustrating than trying to remove a single food item or group at a time. My hindsight wishes I would have known to try a full elimination diet far earlier than at two years gluten-free.

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      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
    • trents
      There is such a thing, believe it or not, called gluten withdrawal. Gluten has addictive properties similar to opiates. I know it sounds bizarre but research it. Also, are you compensating for the loss of vitamins and minerals you were getting from the FDA mandated fortified wheat flour products you were formerly consuming?
    • Julie Riordan
      Just wondering can anyone help me out.heading on holidays and don’t really know what expect.if I get glutened are there tablets that you can take
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