What To Do?

[suziq0805]

I'm interested in knowing opionions from others here about this. My mother-in-law is scheduled to have her gall bladder removed in a couple weeks and at the same time they are doing a surgery for acid reflux. She's had multiple miscarriages and my husband was born 2 months early. I remember her mentioning she sometimes alternates between diahrea and constipation, but I don't know to what extent. My mother-in-law's nephew is beginning to suspect a gluten issue, there is celiac in a couple distant relatives, my 18 month son may have it (carries two copies of DQ8), and my husband has mentioned his stools have always been loose. There are no diagnosed cases of celiac in the immediate family, but I just wonder about her. Am I reading into things too much?? IF she would have undiagnosed celiac, could a gluten free diet change the need for surgery? My husband is considering getting tested and I'm wondering if it could be beneficial to do that before her surgery. My mother-in-law had an upper endoscopy done for her acid relux and mentioned to her doctor that my son may have celiac but the doctor didn't feel a need to check for celiac during the procedure. I'm also getting tested via biopsy in about a week due to years of weird symptoms from chronic pain to dizzy spells to stomach aches. We learned about celiac once my infant son began having reactions to food and we THINK we narrowed it down to wheat/gluten, then we got genetic tests done and discovered he has 2 copies of DQ8, so that means that issues his dad and I each have could possibly be explained by celiac, and have family members that have issues that could be explained by celiac. Wouldn't that be crazy is celiac is an issue for everyone??? But Thanksgiving would sure be easier then! It's been fascinating learning about celiac, but then I feel I sometimes read into things too much and pretty soon I think everyone in the family could have it!

[eatmeat4good]

I don't think you are reading too much into it....it is a most under-diagnosed disease...soemthing like 90% are undiagnosed according to Dr. Peter Green in Celiac: A Hidden Epidemic. I can NOT believe her Dr. did not suspect Celiac when it was mentioned having been diagnosed in another family member. You would be doing her a big favor to talk with her about it. Pick up the book by Dr. Green, or have her read online here...to see if she thinks her symptoms fit. Then she will be better able to negotiate for testing with her Dr. or decide what is the best way to proceed with her health problems. I cannot imagine that she would be offended. If anything I would hope she would see you are a very loving and concerned family member. After all it is hereditary...and if she has it she could be feeling soooo much better soon. I would hope you would tell her as soon as possible. She can decide if it fits or if she thinks you are "reading too much into it". You don't even have to say anything about the symptoms you know she has or had...just the genetics of it speaks volumes...and she herself may start wondering if this is the answer when she is armed with enough information. Good for you for suspecting it. I dare say, you are smarter than her Dr. since you knew enough to be concerned after other family members were diagnosed with it. Wow...that is all I can say....Wow! Might be everyone in the family....too bad Turkeys don't have more legs huh?

[suziq0805]

I don't think you are reading too much into it....it is a most under-diagnosed disease...soemthing like 90% are undiagnosed according to Dr. Peter Green in Celiac: A Hidden Epidemic. I can NOT believe her Dr. did not suspect Celiac when it was mentioned having been diagnosed in another family member. You would be doing her a big favor to talk with her about it. Pick up the book by Dr. Green, or have her read online here...to see if she thinks her symptoms fit. Then she will be better able to negotiate for testing with her Dr. or decide what is the best way to proceed with her health problems. I cannot imagine that she would be offended. If anything I would hope she would see you are a very loving and concerned family member. After all it is hereditary...and if she has it she could be feeling soooo much better soon. I would hope you would tell her as soon as possible. She can decide if it fits or if she thinks you are "reading too much into it". You don't even have to say anything about the symptoms you know she has or had...just the genetics of it speaks volumes...and she herself may start wondering if this is the answer when she is armed with enough information. Good for you for suspecting it. I dare say, you are smarter than her Dr. since you knew enough to be concerned after other family members were diagnosed with it. Wow...that is all I can say....Wow! Might be everyone in the family....too bad Turkeys don't have more legs huh?

Well, there's not an immediate family member that is diagnosed. Some 2nd cousins of hers are. 2nd cousins being diagnosed doesn't raise your risk does it? Not sure if you can prove the celiac came from her bloodlines or those that married in though. I've mentioned celiac to some of my family members once we received my son's genetic test results and they seem to get annoyed by me talking about it. So I've kinda been backing off because I don't want to annoy people with it, but yet don't want people to suffer either. And with my mother-in-law I've been kinda hesitant because I think the miscarriages may be a hard issue still and I'm hesitant to bring it up if I don't have solid evidence (like if my son or husband would be diagnosed). Not sure if I should bring up that subject yet because she may feel like she could have done something to maybe prevent the miscarriages, even though she had no way of knowing. I'm getting tested soon, and I'm encouraging my husband to get the blood test. Then we have an appointment with my sons GI doctor to discuss reintroducing gluten into his diet. I was planning to wait until after we know our resluts, but now her surgery is scheduled soon and I'm wondering if I dare bring it up yet or not. If I can get my father-in-law not around mother-in-law sometime maybe I could try talking to him about it to see what he thinks.

[carecare]

We have a similar situation in our family. My husband went gluten free 2 yrs ago because of intestinal issues for 15-20 yrs. Cleared up completely now that he's had time to heal. His mother is lactose intolerant and says "oh, I just can't eat whole wheat." ...and had early osteoporosis (whatever that is called...scans showed it)...plus a thyroid condition (her mother had graves disease) She will never look into whether gluten is actually the reason for her health problems. Now we are in the process of getting my kids tested with endoscopies because of their health issues. I also think I have an issue with gluten as when I'm gluten free I feel so much better...then on gluten I get IBS symptoms and feel sluggish and get itchy skin. Now the person in my family that I wish would insist on testing for celiac is my sister who has probable MS...and is having a lot of health problems and in and out of the hospital. Last week she was at mayo clinic in Minnesota and I urged her husband to insist on a celiac test. Nope...the dr's said "lets focus on getting her healthy and over this hump."...and the neurologists wouldn't do a celiac panel on her. Yet they took blood to check thyroid as it was elevated slightly the last time she was there. She also had something with her kidneys that was off the last time there too...and has lots of neurological symptoms that sound exactly like gluten ataxia yet they do not want to even consider gluten might be the issue. Her husband has severe psoriosis now at 40 has arthritic psoriosis and just had his gall bladder out...and had D for years and said he thought it was the psoriosis maybe effecting his intestinal tract. He asked his dr about celiac a year ago and the doctor "poopooed" the idea saying it is not an autoimmune disorder and it has nothing to do with psoriosis. Their son had a terrible rash as a child that looked exactly like DH as well..and has the enamel hypolasia so bad he's had to have almost all his teeth capped before the age of 10..they were just like chalk. Now as a 16 yr old has a rash on him that he's very secretive about and says it's only bad after a shower. Yet...do you think that family would push for testing...no they haven't and I want to scream!!!! LOL I was going to stay at their house last weekend and purge their house of gluten...and just make them go gluten free...but then my sister got sicker and had to head to mayos. Now because Mayos says no to testing...I don't think they are going to try gluten free. Also, my extended family has numerous auto immune conditions. I can't help but think celiac is the root of most of it.

Sorry for the rant....but sometimes it's so frustrating seeing family not realize how their health could change just by taking gluten out of their diet. I don't understand how people just won't accept it and/or just give it a try as they have absolutely nothing to loose and only sooooo much to possibly gain by giving it a try.

[carecare]

I also want to say...since my husband is anti-doctor he wouldn't go in when he was having gallbladder attacks. It was right before going gluten free...and a couple months into the gluten free diet as well. He spent his attacks in pain on the floor whereever they occured (at home luckily)...almost passed out a couple times from them. We did a lot of reading and he eliminated the foods that tend to cause gallbladder attacks in some people. Then slowly reintroduced them back into his diet...except gluten. After about 5 months he no longer had attacks and was able to add everything back successfully besides the gluten. I don't think people really think you can avoid gall bladder surgery...but my husband is one that did. Truthfully, I was really upset with him for not going to the doctor. I didn't think he could heal from those attacks. Amazing what diet can do for your health!

[suziq0805]

I talked with father-in-law and he said she gets constipation when traveling, but not really other times. If she takes a laxative then she ends up with diarrhea. And she only had 1 miscarriage. After he said that I realized that it was her mother that had 3 miscarriages, so I got that confused. Her cousin that has celiac also had gall bladder issues. Mother-in-law came in during the conversation and mentioned that she asked her GI doctor about it but he wouldn't test her for it. She said something about that it's crossed her mind before that maybe she could have it.

[carecare]

You know...I don't understand the need for doctors to say "no, we don't need to test for celiac." If a patient asks for a test....shouldn't the doctors just do it.

Also, forgot to say my husband had bad indigestion for years before going gluten free. I used to get so upset with him for not going to the doctor and just suffering. Now I think back and had he went to the doctor they would have just prescribed him some pill to take to help the indigestion instead of trying to figure out what was causing it. His indigestion was the first thing to disappear going gluten free. It was almost immediate! I still think your MIL would be wise to get a test done.

[suziq0805]

I'll add that here is why I wonder about it with additional family members. I do realize that just because various family members show these issues does not mean they have celiac, but I just wonder. I'm really anxious to find out my biopsy results. If I have a positive biopsy then I'll really wonder. Am I crazy to wonder about these people?

My father- during a battle with rare lung cancer something showed up in an intestine during a CT scan and some doctors thought diverticulitis and others didn't because he didn't have pain (could it have been a celiac related tumor since it is gone now with continued chemo? or competely unrelated?? who knows); non-infectious hepatitis many years ago (no idea if this could be related, but just threw it in there in case hepatitis is auto-immune); food issues as a kid; horrible hay fever with postnasal drip year around; recent diagnosos of perpherial neuropathy (it could be chemo related too)

My brother- really skinny like dad was as a kid; bad discoloration on his teeth at 16 years old

Paternal grandmother- lactose intolerance, IBS

Aunt (dad's sister)- as a kid was on a special diet to gain weight b/c she was so skinny (and to my knowledge she did not have an eating disorder)

Maternal Grandfather- migraines

Maternal Grandmother- lactose intolerance, IBS, diarhea issues (that the rest of the family says are because she gets herself so worked up about things), depression issues that aren't always well-managed by meds, possible osteoperosis (she's either on meds for it or to prevent it- i'm not sure which), and I've also wondered about anxiety or OCD tendencies with how picky she is about cleaning certain things/how things must be done

Mother- recently began displaying similar emotional issues as her mother, headaches

Aunt- constipation issues as a kid- everyone always says how she always had to drink her prune juice

Uncle- epilepsy as a kid but seems to have outgrown it

[carecare]

All of that family history really makes you wonder doesn't it! It looks a lot like my own family's history of different things and I think they are starting to think I'm a little nuts with the whole "you should get tested for celiac" statement all the time...LOL Or my statement "you should really just try a gluten free diet." I must say it at every family gathering.

When you start thinking about other family members and health issues...you just wanna smack some sense into them...to at least TRY it...the gluten free diet that is.

---My niece has been getting unexplained hives for the past 6 yrs...nobody has figured out why. I told her to try gluten free. Had a negative celiac blood test but has yet to try gluten free.

---my father died of colon cancer with also prostate cancer, my brother died of brain cancer, my sister died of breast cancer

---lots of siblings with depression and/or other mental illness disorders (sister schizoeffective)

---other autoimmune in just my siblings (possible MS, diebetes, sarcoidosis,fibromyalgia)

---almost all siblings have dealt with migraines as have their own children...some very severe

---mother and her siblings gall bladders removed

---me and two brothers appendicitis

---mother hyshimotos thyroid

---her mother has that vitamin B12 deficiency disorder + thyroid disorder as well.

---6 siblings have had colon polyps removed (yes...I have a large family...16 siblings)

---probably half of siblings have IBS

---lots of nieces and nephews with various health problems (crohns and celiac in niece)

---and my own kids having issues...all of them because I think they've been given the double whammi...two parents with gluten issues.

I'm sure there is so much more just in my family....but I really want to get the genetic test done to see if we have the gene. Then maybe my siblings would decide it was probably a good idea to get tested for celiac. I'm in the process of doing that myself.

[suziq0805]

---My niece has been getting unexplained hives for the past 6 yrs...nobody has figured out why. I told her to try gluten free. Had a negative celiac blood test but has yet to try gluten free.

Has your niece been tested for diabetes? I have a coworker who has a daughter that kept getting hives and nobody could figure it out. Long story short- it turned out to be diabetes. They later found out that diabetes can cause hives....nobody ever tested for it though. Sadly, it almost cost the child her life. It's truly a miracle she's still here today.

[BabsV]

I'm interested in knowing opionions from others here about this. My mother-in-law is scheduled to have her gall bladder removed in a couple weeks and at the same time they are doing a surgery for acid reflux.

If she's scheduled for nissen fundiplication surgery I'd say urge for a blood test just to makes sure the surgery is necessary! I had a sliding hiatus hernia that had to be repaired this way and even though the surgery was laparoscopic it was MAJOR surgery. It knocked me low for weeks, it was almost 3 months before I felt anything near full strength, and I lost a serious amount of weight afterwards. The surgeon didn't consider the surgery a 'big deal' since for him it wasn't a huge challenge. The nurses however all told me that most people take 6 months to recover! This all happened well before my Celiac diagnosis...