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2 Weeks Since My Celiac Diagnosis

jerseygirl221

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jerseygirl221 Rookie
jerseygirl221
Posted

I was diagnosed with Celiac 2 weeks ago. I have been experiencing symptoms for the past 10 years......since I had my 2nd son. I had my gall bladder removed about 2 months after I had my son. I have been suffering with digestive problems ever since. I was told that I developed IBS after the gall bladder removal. Since last October, my symptoms have peaked....I have been to an Endocrinologist, who said my Thyroid is fine, and I was sent to a Rheumatologist, who tested me for a wide variety of diseases/disorders like MS, Lupus, RA, Lyme Disease, the only result from his blood tests was that my Vitamin D was very low. I saw my GI doctor in July, and requested a blood test for Celiac. My blood test came back "elevated", and he then sent me for a Endoscopy, and my biopsy showed that I had Celiac.

I have been gluten free since he called me with those results. I think I am experiencing withdrawl, detox like symptoms. I have been very achey, and tired and my emotions are all over the place. My stomach is constantly gurgling, and my stools have changed-which I'm sure is due to the diet. Has anyone elso gone through this? If so, how long can I expect this feeling to last? I feel like I am pregnant (which I AM NOT! ) Any input, suggestions, or comments are welcome!

I am thankful for this site and these forums.

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eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, it is probably withdrawal. It can last for several weeks. It is very uncomfortable, but once your body adjusts things will start getting better. There will be good days and bad days and you may think you were glutenend even if you weren't because your body is detoxing. You are absolutely right about that. My stomach was rumbling and gurgling and I decided it was my "baby villi" trying to grow back. I had a lot of nausea for a few weeks until I got really good at being gluten free. For example...the days I cleaned the pantry and the cupboards of gluteny foods, I'm sure I got contaminated. But after a few weeks things started to get really good and I could tell this was the right track. Welcome to the board and to your new gluten free life. The recipe section is fantastic. Wish you the best.

Twinklestars Contributor
Twinklestars
Posted

Hello, congratulations on your diagnosis! You are a confirmed celiac, so you WILL get better with a gluten free diet.

I've been gluten free for 5 days now, and my nausea has just subsided. It may come back, I don't know, but up until this morning I was feeling pretty awful.

My stomach rumbles and gurgles too. Especially after I eat!! I have that bloated tummy look too. And I'm soooo tired!

From what I've read though, it's all normal. I think it varies from person to person as o how long it lasts. Bu you're on the right track, which is the important thing :)

Takala Enthusiast
Takala
Posted

Sometimes the substitute gluten free ingredients that are used in commercially prepared gluten free baking do not agree with the newly gluten free eater. Try sticking to foods that are as unprocessed as possible, such as meats, fish, eggs, fruit, vegetables, nuts, and going easy on the grains at first. Maybe just stick to rice, potatoes for the carbs. You could be hungry, so start adding in good fats such as olive oil, avocado, coconut oil. Sometimes it takes a while to figure out what the culprit is. Some people cannot do any dairy at all at first, then can add in non lactose dairy later, others cannot do soy. At first I did not even do grains at all, (SCD diet) and learned to make "breads" from just almond meal, later I reintroduced a lot of foods and now can eat a lot of stuff I wouldn't have gone near when on a conventional diet.

Because of malnutrition issues you will also likely be needing to take a gluten free B vitamin complex, multivitamin, and calcium magnesium and D. The B complex is like a wonder drug for us as we adapt.

jerseygirl221 Rookie
jerseygirl221
Posted
  • Author

Hello, congratulations on your diagnosis! You are a confirmed celiac, so you WILL get better with a gluten free diet.

I've been gluten free for 5 days now, and my nausea has just subsided. It may come back, I don't know, but up until this morning I was feeling pretty awful.

My stomach rumbles and gurgles too. Especially after I eat!! I have that bloated tummy look too. And I'm soooo tired!

From what I've read though, it's all normal. I think it varies from person to person as o how long it lasts. Bu you're on the right track, which is the important thing :)

So you are new like me! I have the nausea on and off. I feel like my stomach is sticking out right now-I guess that is the bloated tummy look.....I have enough padding there without it looking bloated as well! Good luck with your new lifestyle!

Twinklestars Contributor
Twinklestars
Posted

Thanks :) I'm not yet diagnosed though. I'm waiting for blood test results at the moment, and am undecided about going back on gluten for any further testing. Little steps!

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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

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      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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