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Afraid Yet Optimistic, For My Husband
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39 posts in this topic

The biopsy was only taken from four places in the duodenum, as the GI doctor didn't see any gross signs of inflammation anywhere except the esophaugus.

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oh and his CMP is always normal. We get a CBC, CMP, and fasting lipid panel every year. In addition my husband had a sedrate and rheumatoid factor about 6 months ago, sed rate was normal, rheumatoid was negative as usual.

Despite the fact that he weighs 260lbs his cholesterol levels are always perfect, lower than mine. his liver function is normal, electrolytes and kidney function are always fine as well.

EDIT: His GI follow up is on december 4th. If the doctor agrees the the blood panel you listed, will remaining gluten free until that point effect the results?

Also, when you listed the tests, what does Bs stand for?

Bs, D, K, Iron, Ferritin, Copper and Zinc

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All good...would still suggest completing his celiac blood work and nutrient testing. Does his weight match his diet/exercise levels? I ask because some of us have unexplained weight gain rather than weight loss with Celiac Disease. I was deficient in many nutrients despite all other tests being "normal" for decades.

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Just watched that video, wow what an eye opener!

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Please take a peek at the Australia/New Zealand thread--they mention lots of special treats that are gluten free and can be found in Australia. Personally, I LOVE the Butterfingers shortbread cookies...and there's a shortbread cookie that's orange flavored with chocolate frosting that I adore. My daughter ships these home to me for the holidays.

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oh and his CMP is always normal. We get a CBC, CMP, and fasting lipid panel every year. In addition my husband had a sedrate and rheumatoid factor about 6 months ago, sed rate was normal, rheumatoid was negative as usual.

Despite the fact that he weighs 260lbs his cholesterol levels are always perfect, lower than mine. his liver function is normal, electrolytes and kidney function are always fine as well.

EDIT: His GI follow up is on december 4th. If the doctor agrees the the blood panel you listed, will remaining gluten free until that point effect the results?

Also, when you listed the tests, what does Bs stand for?

Bs, D, K, Iron, Ferritin, Copper and Zinc

Yes, that would be too long guten free, get them done now. The Bs referred to would be B vitamins...

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Frieze is right...that would be too long. You can usually call either your Primary or the GI and explain that the Celiac Panel NEEDS to be run now as your husband has begun eating gluten-free and you will lose this data if you wait for your December appointment.

Yes, B12 is often checked for deficiency -- my celiac doc runs B1, B2, B6 and B12

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well I called the GI doctor and asked the receptionist about the tests that were suggested, that was two days ago and I still have not recieved a call back. They probably think I am neurotic to be asking to take all of these tests, but I just want to be complete. If there is any question that gluten could be causing these problems, why not go ahead and get the full evaluation?

I am trying to find a new primary, because I doubt our old ones capabilities at time. He wanted to put my husband on medicine for inflammatory bowl without even getting any tests done, I had to push for the GI consult, which come to find out, I don't need a referral to go to a specialist with my current insurance so he could've gone at any time, of course with a nonmedical background he just accepted what that physician said and didn't bother to ask any more. Even though his symptoms were not under control with the welchol.

EDIT- Also, no my husbands weight does not reflect his diet and activity levels. He has had his thyroid checked, always normal. When he was running on a daily basis and working out he got down to about 240. We do eat some junk food but overall we don't eat horrible compaired to some people. I have noticed that he does overeat though. After meals he is usually hungry, and many times he will not eat during the day becuase it will make him have to spend too much time on the toilet. It's not that he isn't hungry, but if he waits to eat until he gets home then he can just spend the rest of his night in the bathroom as opposed to it effecting his job.

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Just an update. Today he ingested wheat on accident. He ordered some naked wings while working and forgot to ask about tje sauce till after he ordered. It had wheat as an ingredient but he chose to eat It anyway. His stomach is in bad shape.now, gas, pain, and loose stool, which he told me is tan in color.

I am trying to gain as much info as possible to pass on to our GI doc , not trying to be gross , but it would seem to me that he reacted to the wingsauce with the wheat? His belly has been fine all week otherwise.

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It sounds like you have an answer already if he reacted to wing sauce so badly. I would stick with gluten free.

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Heard from the GI doc today, The lady on the phone said they will do a celiac panel which includes genetics testing and iron, she said the other vitamin tests I would have to get done from a primary care physician. So I am very excited about that, I would think the genetic testing would be more definitive?

Do you have to be eating gluten for the genetic testing? It has been a week and a half gluten free and my husband is already feeling so much better. He isn't taking any antiinflammatories for his hands for the past few days which is a miracle. He still has to run to the bathroom on occassion, like after eating a big meal, but I can tell it's not as bad because he isn't in there as long or as frequently. And his overalll mood is actually better.

Also took my kids to the pediatrician today for their asthma/allergy follow up. My daughter is 5 and has to get bloodwork for an allergy panel and she is the one who has issues with constipation and complaining of abdominal pain a lot, (after eating especially). So when I told her about my husband being worked up for celiac she said we might as well add the bloodwork in for the pediatric celiac panel since she is getting bloodwork done anyway. She said she has had some concerns about her abdominal pain and constipation but we have just been monitoring it so far and it hasn't gotten any worse. She does have a big appetite at times but and her BMI is on the higher end of normal. so I have the order and will be taking her to get the bloodwork done next tuesday.

My son, he is only 3, his asthma is under control with no wheezing issues recently. No upper respiratory problems and no GI symptoms. He had to have bloodwork done for allergy testing last year when his asthma was really bad. But she said since he is not symptomatic, he is growing normally, she doesn't want to subject him to the trauma of getting blood drawn again so soon. She said we will monitor him closely for symptoms and also signs of anemia. She did say though if anything comes up and he needs bloodwork for any reason then we can get it done at the same time. I agree with her, the poor kid already has been through so much with his asthma, and being a boy he has had stitches, so he is terrified of needles. She is an excellent pediatrician and I trust her completely.

Anyway, that is my update, just thought I would share. This whole thing has kind of thrown my world into a little bit of chaos. but let me tell you what else, it has opened up my eyes to our food industry. I am focused on cooking and preparing whole foods and yes it is a little more work, but I look at the health of the people in our society and I can't help but feel that the root of it is in what we put into our bodies. My grandma is 84 and still lives alone, drives herself, everything. She always had a garden, chickens, eggs, and a few cows so she could slaughter a steer every few years. The only health issue she has is mild osteoporosis, not bad since she had 6 kids, and she had an episode where her heart rate went to fast once (SVT). Her heart however is strong and healthy. I want to be just like her. :)

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UPDATE:

Followed up with the GI doc today. All of my husbands labwork is completely normal. The whole panel. He said he does not have celiac. He does however think he is sensitive to gluten given his positive response to a gluten free diet. Our doctor actually reccomended we read "wheat belly" and said that there is a theory that the protein in wheat causes systemic inflammation. He wants my husband to eat as many whole unprocessed foods as possible. He did however mention that he is going to label it as irritable bowl syndrome as a diagnosis. I am thankful for a diagnosis, thankful that it isn't celiac based on all of the other problems that can be related to that. Dealing with a sensitivity as opposed to a true allergen still won't be easy but he feels better and we are going to keep at it. Thank you all so much for the information here and the support.

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UPDATE:

Followed up with the GI doc today. All of my husbands labwork is completely normal. The whole panel. He said he does not have celiac. He does however think he is sensitive to gluten given his positive response to a gluten free diet. Our doctor actually reccomended we read "wheat belly" and said that there is a theory that the protein in wheat causes systemic inflammation. He wants my husband to eat as many whole unprocessed foods as possible. He did however mention that he is going to label it as irritable bowl syndrome as a diagnosis. I am thankful for a diagnosis, thankful that it isn't celiac based on all of the other problems that can be related to that. Dealing with a sensitivity as opposed to a true allergen still won't be easy but he feels better and we are going to keep at it. Thank you all so much for the information here and the support.

This is great news...most especially is your GI's analysis -- this is not common, but it should be.

Caution -- Non-Celiac Gluten Intolerance can be just as severe in the areas of cross-contamination. Your husband will likely know if he is sensitive to minute amounts of gluten after a solid 3-6 months gluten-free.

Congratulations on the good news...hang tough and check back in if you have questions or simply need to vent a bit.

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This is great news...most especially is your GI's analysis -- this is not common, but it should be.

Caution -- Non-Celiac Gluten Intolerance can be just as severe in the areas of cross-contamination. Your husband will likely know if he is sensitive to minute amounts of gluten after a solid 3-6 months gluten-free.

Congratulations on the good news...hang tough and check back in if you have questions or simply need to vent a bit.

yes, there is a reason I chose this particular doctor and there is a reason he was so difficult to get into. When the office offered for my husband to see another physician in the practice I refused, I said I would wait as long as it takes to get him in with this particular physician because I knew him from work and am a patient of his as well. I talk to a lot of GI doctors and this one has always impressed me with his knowledge base and view on medicine. He went through my husbands schedule and eating habits and made personalized reccomendations for his eating habits. I have been nagging my husband about his eating habits for years saying that it could be just that making him sick. When the doctor said everything that I have been saying for years, my husband actually listened and is following through. Eating breakfast, eating snacks throughout the day to keep from overeating at the end of the day, avoiding soda's, wheat, and dairy products, and most of all avoiding processed foods. Little things but IMPORTANT to anyone dealing with GI issues.

I deal with a lot of physicians and there are a select few that I truely trust and respect. I wish there were more.

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    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
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