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New To All This & Confused!

LISMom

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LISMom Newbie
LISMom
Posted

Hi All,

I am new to this board and am so confused.

Long story short: I've had IBS since the early 80's. In the mid-90's I had a sudden onset of autoimmune symptoms complete with positive ANA & rheumatoid factor. Many rheumatologist, endocrinologist and GP visits with speculation of fibromyalgia, chronic fatigue, lupus, MS, etc. over a 7 year period. Nothing ever got solved (although there was some consensus around a possible adrenal insufficiency.) And I got sick of Dr's, went the acupuncture route (which did help) and got on with life. But pretty much always tired & achy with IBS flare ups.

Fast forward to a few months ago: I started Weight Watchers & my pasta loving daughter went to college. About a month ago I had my first pasta in about 4 months and before I could even finish eating I was doubled over. A night of intestinal fun followed by waking the next morning as sore and exhausted as I've ever been. Dr's office suspected a gluten/celiac issue & did bloodwork. They told me not to avoid gluten yet so this weekend I had pancakes and pizza (which I've been avoiding because of Weight Watchers) and spent Sunday with IBS symptoms, joint pain and fatigue.

Just heard back about the bloodwork: negative. But when I pushed back and mentioned the reaction to the pizza/pancakes they said they bet that I'd feel much better when I went gluten free. So...

1) do I need to follow up with the doctors? Does it even matter if I'm going to try gluten free?

2) what is the best way to begin a gluten free diet? I've bought a book and read some stuff on the web but it's so overwhelming!

3) how quickly do people start to feel better if it is truly a gluten issue?

Thanks so much in advance for any insights :)

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etta694 Explorer
etta694
Posted

To encourage you, my guess is that you will start feeling better right away since your symptoms are so immediate after eating. You need some of the advanced member input here for sure but.. from a newbie (9mths gluten free) I didn't actually find it that bad.. even though it did seem overwhelming. I started eating from 'the perimeter of the store'. Veggies, fruit, meat (not sausage or cold cuts), eggs, and dairy (although I know some people have food reactions to more than just gluten). The simpler, the better to begin with. The hidden gluten is the trickiest. The additives in processed foods can hide in different names.

https://www.celiac.com/celiac-disease/forbidden-gluten-food-list-unsafe-ingredients-r182/ or

Open Original Shared Link

First I started just trying to make soups and stews with rice flour and potato flour and that worked really well. After a while I started buying some different flours and started baking too. It is SO WORTH IT!!!

NancyL Explorer
NancyL
Posted

I'm VERY new to gluten-free, but I've discovered many things that I already loved and was buying that were gluten free. For instance Smart Balance for butter, Soy Creamer for my coffee, etc. I just take a jar/can/box whatever that I would like to eat and type it's name into Google with "gluten free" after it and usually easily find the answer to whether it is or isn't.

Some of the more seasoned people here will most likely advise you to drop dairy at first too (and soy) until your body recovers but once you're back, you'll find that most cheeses (if not already shredded) are gluten-free, there are yummy gluten-free cereals (such as Cinnamon Rice Chex and Honey Rice Chex) and the gluten-free bread is actually quite good. :)

Fresh fruits and veggies (be careful of salad dressings and seasonings though), meats you cook yourself and there is substitute pasta and just about anything you can think of.

Good luck! I hope it works for you and you feel better asap.

eatmeat4good Enthusiast
eatmeat4good
Posted

I'm only 4 months into gluten free, but spent the last 7 years of my life unable to walk due to "fibromyalgia", migraine headaches, depression, anxiety, and many more things that Rheumatologists, Dermatologists, and Internists could not diagnose.

I don't think you have to follow up with Dr.'s at this point. You have done what you can to try to find the answer and so have they. You can try gluten free for several months and see how you do and if any medical problems arise in that time, sure you can go to the Dr. to check them out.

Celiac doesn't always show up on tests, and Gluten Intolerance is just as severe in terms of symptoms.

It sounds like you will very quickly have positive results from going gluten free.

Just read, read, read, and ask questions here.

I made a lot of mistakes, but found the answers by searching here.

This is my lifeline.

I'm excited for you! If this is your problem, you will be getting lots of nice surprises as you heal. And I mean good ones! I'm still finding symptoms going away that I never knew were related to gluten.

It's really been a miracle for me and the best part is getting my brain back. I can think and am not foggy and spacy like I was. Unless of course I get gluten accidentally. THat will be your challenge now. Finding all the ways gluten can enter accidentally. We call it cross contamination and people tend to get MORE sensitive to gluten once it is out of their system...like you and the pasta after 4 months. That is going to happen and instead of thinking "I got the flu" or "My fibromyalgia is back" now I think of "Hmm how did I get gluten this time?"

It is a new adventure...but well worth it. Welcome! I hope you heal fast!

LISMom Newbie
LISMom
Posted
  • Author

Thanks so much for all the positive feedback! I admit to getting very angry this afternoon after hearing from the dr's as it brought back all that wasted time and money I spent a few years ago.

I've been good today and making sure that everything I've put in my mouth has been vetted. Not terribly hard as I've been trying to be "good" for Weight Watchers anyway.

I think I'll be spending alot of time here! For those of you who consider yourselves "newbies" how long did it take before you felt like you had a reasonable idea of what you were doing with your food?

NancyL Explorer
NancyL
Posted

I think I'll be spending alot of time here! For those of you who consider yourselves "newbies" how long did it take before you felt like you had a reasonable idea of what you were doing with your food?

I still don't always know. :) I've surrounded myself with snacks and staples that I'm sure of and then everything else, I have to look up as I go. This board is SO Full of VALUABLE information, check out the recipes section, I find LOTS of help in there. My snacks and staples are things like gluten-free bread, Chunks of cheese (not shredded), eggs, gluten-free cookies, crackers and pretzels and I found some gluten-free peanut butter yesterday!

mushroom Proficient
mushroom
Posted

One thing I am never without when I am out and about is Larabars. They are a wonderful portable snack bar with no HFCS and no soy and tide you over until you can get a real meal.

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Igg postive Rookie
Igg postive
Posted

Just heard back about the bloodwork: negative.

Lismom,- It sounds like you have autoimmune problems with adrenal insufficiency and RA. (about.com under Mary Shomon has a good forum that includes adrenal problems) Did you get the full Celiac Blood panel test? I have notice some doctors from some of the comments are not giving the full panel. Autoimmune problems persons seem to have a higher chance of having celiac problems. The doctor you saw was he well qualified working with Celiac disease? It seems to make a difference.

eatmeat4good Enthusiast
eatmeat4good
Posted

It took a few weeks to be sure of what I was doing with my food. Just the anxiety of it all, and not wanting to make a mistake. Made a few anyway. As for snacks, I'm never without nuts in my purse, just in case.

That said, I last got glutened handing out food to little ones in the family at a gathering.

Thought I washed my hands, but got it somehow anyway.

You will make mistakes, it will take time, you will heal and feel better.

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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
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      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.
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      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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