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2 Weeks Since My Celiac Diagnosis


jerseygirl221

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jerseygirl221 Rookie

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

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.

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Twinklestars Contributor

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 :)

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Takala Enthusiast

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.

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jerseygirl221 Rookie

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!

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Twinklestars Contributor

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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    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
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    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
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      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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