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So Overwhelmed! Where Do I Start?

kbjoseph

By kbjoseph
in Coping with Celiac Disease

Recommended Posts

kbjoseph Newbie
kbjoseph
Posted

Hi! I'm new to this forum and very new to being Gluten-free! I haven't been diagnosed yet with celiac or a gluten allergy, but I've been dealing with major symptoms and negative doctor's tests for years. I've been tested for lupus, lymes, cushings, B12 deficiency, etc... I found out that a friend of mine with similar problems/symptoms and negative test results said a gluten-free diet has helped her a ton... so here I am!

It's been about 1 month trying to live gluten-free and I can already tell a difference in my symptoms. Actually, I'm still learning what does and doesn't have gluten in it, and I can tell when I have gluten... the symptoms I didn't even know were related to my diet always come back. So I guess you can say I've been self-diagnosed. However, I'm getting very overwhelemed and comfused. I don't know where to start or how to educate myself (other than finding this forum by googling "is there gluten in ____(fill in the blank)" :)

I guess what I'm asking is where should I start... I don't have time to google everything I need to know, and plus there's so much confusing information on the internet these days. Can anyone recommend a book or something that helped you get on track? I'd really appreciate it!

Thanks!!!

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RiceGuy Collaborator
RiceGuy
Posted

Here are some resources for you:

Safe and unsafe ingredients:

https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-safe-ingredients-r181/

Gluten-Free recipes:

https://www.celiac.com/categories/Gluten%252dFree-Recipes/

Welcome! You've come to the right place for answers.

cassP Contributor
cassP
Posted

i totally want to get this book:

Open Original Shared Link

i was tested for Lupus for a couple of years when i was a teen. and Sjorgens.

i really wish these doctors would open their mind a little bit more- i mean if someone's got a few tests or symptoms that suggest an autoimmune disease-> and you test for 2 of them over and over- and it's negative- search for the other autoimmune diseases!!!!! i just dont get it- our docs are supposed to be the experts- and they just shrug their shoulders and say "i dont know" ... here's some Prednisone, or Prilosic, or antibiotics :angry::angry:

OY VEY. and my super great doc who did the Heildeberg test on me and ENLIGHTENED me on my Hypochlorhydria... why didnt he think to suspect that i also might have H.Pylori or SIBO...

OMG... i should be a freaking doctor

sorry, didnt mean to RANT on your thread.

i totally believe you have a gluten problem. Celiac or not, gluten has been linked to so many autoimmune diseases, and digestive diseases. good luck with all the understanding- there's lots to learn on this forum :)

i-geek Rookie
i-geek
Posted

To make it easy on yourself while you're learning, stick to basic, whole foods as much as possible and cook for yourself so you know exactly what goes in your food. Fresh meats, veggies and fruits, grains like rice and quinoa, pure herbs and spices (seasoning blends are risky and often contain wheat)- McCormick is a good brand, pure oils and vinegars, eggs, minimally processed dairy (if you can tolerate it- I couldn't for a few months). If you need a treat, stick with the ones that are specifically labeled "gluten-free" so you don't have to worry.

It gets easier, I promise. I've been at this 8 months and it gets better all the time.

SGWhiskers Collaborator
SGWhiskers
Posted

I'm all for a self diagnosis, but if you think you want to have a formal diagnosis, you need to keep eating gluten. You said you were blood work was negative for a bunch of other tests, but it wasn't clear to me if you had ever been tested for celiac via blood tests. If you want that done, you need to be eating gluten regularly for 6 weeks. With that said, if you feel better off gluten, then skip it. You don't necessarily need a doctor's diagnosis.

This site is the best place you could have found. I found that remembering Kraft, General Mills, and Unilever brands (identified with a capital U on the back of the product) all will clearly list the source of gluten containing ingredients helped me with my grocery shopping. That means if you don't see wheat, rye, barley, or oats on the ingredients list, a product from them is safe. Not all of their products are gluten free, but you can at least read the labels and tell the difference without having to call the manufacturer.

Keep it up and keep checking this forum. There is SO much valuable information here to be shared. I could not have gotten better without these folks.

sgw

kbjoseph Newbie
kbjoseph
Posted
  • Author

Wow! Thanks everyone. I'm feeling more motivated now and I'm going straight to (Company Name Removed - They Spammed This Forum and are Banned) to buy some books. It's a relief to learn that I'm not the only one who has had horrible experiences with Doctors. It's devastating to keep hearing that they can't find anything wrong with me...but still knowing deep down that something is wrong and I'm way to young to be living like this (mid 20's). It's caused me to slip into a slight depression and It's finally catching up with me. I haven't taken a gluten-free diet very seriously until now. I think due to the negative experiences with Doctor's lack of a diagnosis, I was kinda skeptical that I found the answer on my own... but now after doing just a little bit of research I'm convinced that going gluten-free is my answer!

Now I just have to stay positive and educate myself! But everyday has been a battle. I was craving greasy breaded food the other day and my sweet Husband went out and bought a little frier and made me chicken fingers using gluten-free all purpose flour and crushed up gluten-free corn flakes... but I learned the hard way that there was gluten in my BBQ sauce that I dipped my wonderful chicken fingers in! UGH! It's gonna be a roller coaster ride isn't it!

i-geek Rookie
i-geek
Posted

Time to buy new BBQ sauce. :)

My mom bought this so that she could serve us BBQ chicken (she cooks mine on foil): Open Original Shared Link. I think she bought the Regular variety. Good stuff. We also like Sweet Baby's Ray's sauce- also gluten-free.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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