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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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    • The doctors just made me feel like I was crazy because they did not have a clue of what was wrong with me. I did a stool test (positive) and I did a genes test (positive for two gluten sensitive genes, one in each chromosome).  Blood test are not so foolproof, if you read the comments/experiences in such topic you will see the problems. Biopsy can give a false negative if taken from an undamaged area. If you have medical problems that go away once on a gluten free diet then gluten is the problem. The medical establishment profit from managing your medical problems and big pharma makes money by pushing pills so we need to be careful because they won't benefit if a gluten-free diet solve your problems. Since I started a Gluten free diet I have been free of the following: (all related to Celiac)  Irregularity, Intestinal noise, Irregular stool, Tooth enamel defects, Rash in upper arms, Abdominal swelling, depression, fatigue, irritability, lactose intolerance, 
      loss of memory, dandruff, uncontrollable bladder, suicidal thoughts, unable to sleep, Canker sores/ Mouth ulcers, high blood pressure, and probably others that I did not realize. I was at the end of my rope, thanks to Google and the people that are able to talk about this I was able to get my life back. I am passionate about this because I know how bad its can get. 
    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
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