Afraid Yet Optimistic, For My Husband

[nicoleashley]

Hello everyone, I am joining this forum in the hope that my husband may finally be close to a diagnosis. He recently got a call from the GI doctor wanting to send him for a blood test to confirm celiacs disease after he had his first colonoscopy/endoscopy last week. The doctor did a biopsy to check for celiac's based on his symtpoms. I am somewhat hopeful that this will finally be an answer after years of tests and medications that don't really help.

But Let me start by giving a little bit of background. My husband and I have been together since we were 17 and married since we were 19. We are both 28, and we have two amazing children. I am a registered nurse and have been for 7 years now and I finally convinced my husband to go to my gastroenterologist after years of dealing with many seemingly unrelated heatlh issues that he has had since I have known him. His hands swell and his joints ache, he gets headaches and sinus infections, his joints ache worse than an old mans. He has struggled with his weight and overeating since he was a child. and worst of all is his chronic GI issues. He has heartburn, reflux, abdominal cramping and alternating constipation and diarrhea. Sometimes his stomach pain is so bad it wakes him in the night and he will spend the night up on the toilet, other times when we try to go out or even grocery shopping all he wants to do is go home because of his stomach pain and constant need to go.

The first doctor I took him to when we were 19 did some bloodwork including a sedrate and rheumatoid factor and some xrays of the joints that were bothering him. (hands, shoulder, neck, knees). He also did an MRI for his headaches. Everything came back normal and that doctor wanted to prescribe antidepressants. Me being in nursing school was very hesitant for him to take antidepressants. I said he was not depressed, he was in pain. At that time I really didn't realize the full impact of his GI symptoms as we had only lived together for about a year and I believe in the beginning he kept a lot of that to himself. We refused the antidepressants because of the potential side effects, especially since at that time he already had a low sex drive, which I didn't realize till much later was mostly related to his stomach pains. So that doctor put him on an antiinflammatory called diclofenac for his joint pain. since we explained that ibuprofen and aleive were not working very well.

The diclofenac helped and his mood improved significantly. But his GI symptoms got worse. So we went to a different doctor who did a whole new round of blood tests and switched him to celebrex and also added omeprazole and allegra for his sinuses. After a few years we switched doctors a few times who would run the same slew of blood tests and keep him on the same medications. Sinus and allergy medicine, omeprazole for reflux, and the celebrex for joint pain. He has been tested for rheumatoid arthritis more times than I can remember.

Our most recent physician that I still go to, well he added welchol to help control the diarrhea. It is a cholesterol medication but apparently it binds with biliruben and causes some degree of constipation and that physician thought that he might have a gallbladder that produces too much bile and causes some of his GI symptoms. He said the joint pain was probably some sort of juvenile osteoarthritis but still has ran sedrates and rheumatoid factor tests on occasion. He also added st.johns wort to help with some of his moodiness. All of these things helped a LITTLE but not a LOT.

The last visit I went with my husband I was practically in tears. I told the doctor there HAD to be something more significant going on. Something systemic to cause someone so young to have so many problems. My husband had reported what he thought to be mucous in his stool on occasion which I told the doctor made me worry that he could have something like chrones or ulcerative colitis. He agreed with me that inflammatory bowl could be at the root of his problems and agreed with my request for a GI consult to my gastroenterologist. He also mentioned that the reason he didn't diagnose inflammatory bowl previously was because my husabnd never mentioned mucous in the stool.

Sorry to be so longwinded, but I just want to relate to you why I actually HOPE that his blood test for celiac comes back positive. So after his colonoscopy and endoscopy the GI doc came out and said that my husbands colon looks prefect, no signs of inflammatory bowl, chrones, colitis, cancer, not even any polyps. GREAT NEWS! He did have a small hiatal hernia, some mild GERD, and duodenitis. He wants him to continue taking his omeprazole and added pepcid prn. He said most likely his symptoms are from irritable bowl syndrome and reccomended him to take metamucil capsules twice a day to help regulate his stool and avoid carbonated beverages, spicy food, and dairy products. At the end of this he said, oh by the way, I am sending a biopsy for celiacs disease because his symptoms sound like and we will let you know. He said this offhand and I stopped him and asked, aren't celiacs underweight and malnourished? That's what He responded that more recent evidence shows celiacs can have a much more broad range of presentations.

So anyway I kind of put it out of my head until the doctors office called and said they wanted to do the blood test to confirm celiac's based on the biopsy. Now I have been researching furiously and I realize all of the problems, including his being overweight are all related and can potentially be a result of this! I am anxious and relieved at the same time. Could a gluten free diet really alleviate all of these symptoms? Could they help him lose weight and stop overeating, could they help decrease his joint pain, headaches, and sinus problems? Most of all put a stop to the endless abdominal pain and diarrhea that he suffers after eating? He is getting the bloodwork done in the morning and I made sure all of his meals today include bread so that if gluten is the problem then it will show up. He has also been symptomatic all weekend. (Sometimes he can go a few days to weeks without many symptoms).

Thanks for listening, and I am sorry for being so long winded. I hope we are close to an answer.

[kareng]

Sounds like he has Celiac. Be sure and get the kids tested before taking them gluten-free.

[rosetapper23]

Yes, your husband is a poster child for celiac....and I'm not surprised it took the doctors so long to figure it out. That, as you know, is common. Doctors in the U.S. simply were not trained to look for celiac disease and didn't recognize it even when symptoms were present. Your husband's overeating may have been caused by malnutrition--no matter how much he ate, his body was starving for nutrients that it couldn't absorb. Recent studies have shown that more adult celiacs are OVERweight than underweight. His joint pain might very well resolve on a gluten-free diet--it has for many of us here on the Forum. My mother suffered from horrible sinus problems her entire life until she was diagnosed with celiac and went on a gluten-free diet. Since it sounds as though the biopsy was positive, the bloodwork really isn't all that necessary. You and he should accept that he has celiac and immediately go gluten free. It is very uncommon to have a false positive with regard to a biopsy.

Your husband is about to start feeling wonderful! If the bloodwork should result in a false negative, please disregard it and have him follow a gluten-free diet. It may take a while to heal completely (12-24 months), but he should see some improvements right away.

[nicoleashley]

Thank you so much for the replies. rosetapper23, I was almost in tears reading your reply. I know it sounds silly, but when you said "your husband is about to start feeling wonderful", I just got a little emotional. I love him so much and I want him to just feel better! I told him after his bloodwork tomorrow we are getting rid of everything in the house that contains gluten. I am totally ready for the challenge of living gluten free.

I understand it will take a while to heal. I was diagnosed with gerd a few years ago and grade 2 esophagitis that took 6 months to heal and for me to start feeling better. I was hurting after eating just about any foods. So I know it will take time for his gut to heal from the damage.

kareng, thank you for mentioning that about the kids! I didn't even think about that, but my 5 year old has complained about abdominal pain quit a lot over the last year. The times I've been to the pediatrician with it she says her abdominal assessment is benign and will tell me if it gets worse to call, but it never gets worse, it just kinda comes and goes and hasn't been bothersome enough to really investigate further. She does sometimes have constipation or diarrhea but I usually just figure maybe she held her bowls too long becuase of school, or maybe ate something to cause diarrhea. Anyway, I will definitely call the pediatrician tomorrow. My youngest who is 3 has asthma and has had allergy testing for environmental allergies, but I also have asthma. His allergy tests were all negative. I hate to subject them to bloodwork, but I am sure she wouldn't mind ordering a test or at least bringing them in to discuss it.

[1desperateladysaved]

NicoleAshley " I hope we are close to an answer. "

I hope so too.

Diana

[rosetapper23]

Your husband is lucky to have someone who is so supportive--that will make a difference between success and failure. WTG!!!

[frieze]

Your doc appears to be more current in his knowledge than many! and don't be surprised if YOUR sx improve gluten free as well.

[nicoleashley]

I had to call the doctors office today to reschedule my husbands follow up appointment because I am working on the day they made his appt. I rescheduled it so that I can go with him. While I was on the phone with scheduling I asked if the nurse could give me more information in regards to the biopsy. She told me "it just says nonspecific inflammation of the duodenum" and "thats why the doctor wants the blood work for celiac". When I asked her about what the villi looked like on the pathology she was like "um, it doesn't say anything here". So I guess I will get a copy of the pathology report from the hospital where he had the endoscopy, incidintly the same hospital I work at. Because his follow up appointment is two weeks away and I am going to go crazy waiting. And the doctor told me that the biopsy was specifically to look for celiacs, so he will be able to explain the results better. Also, the labs are a send out so they will take a couple of days to get back, but I should be able to get them later this week.

Yes, he is a great GI doctor. He impressed me many times with his care and dedication to his patients. I am also impressed that he is investigating for celiacs when as I research more about it, I am seeing all the pieces fall into place.

My husband on the other hand has had a rough day today. I think he is grieving all the food he won't be able to eat. He told me "I pretty much can't have anything I like". He has sunk into a funk and he cooked spaghetti for dinner (kids begged for it). His mood is horrible right now, and I know its because he is frustrated. I tried to point out all the good foods that he can eat but he wont' listen right now. Part of me is afraid he won't take the diet seriously. But all I can do is just try to start making gluten free meals at home with all the wonderful foods he can eat and hope that he see's it isn't too bad. He isn't much of a potatoe eater (I LOVE potates), but he does like rice so I will have to start experimenting with recipes.

Thanks again for listening and I appreciate the words of support.

[frieze]

I had to call the doctors office today to reschedule my husbands follow up appointment because I am working on the day they made his appt. I rescheduled it so that I can go with him. While I was on the phone with scheduling I asked if the nurse could give me more information in regards to the biopsy. She told me "it just says nonspecific inflammation of the duodenum" and "thats why the doctor wants the blood work for celiac". When I asked her about what the villi looked like on the pathology she was like "um, it doesn't say anything here". So I guess I will get a copy of the pathology report from the hospital where he had the endoscopy, incidintly the same hospital I work at. Because his follow up appointment is two weeks away and I am going to go crazy waiting. And the doctor told me that the biopsy was specifically to look for celiacs, so he will be able to explain the results better. Also, the labs are a send out so they will take a couple of days to get back, but I should be able to get them later this week.

Yes, he is a great GI doctor. He impressed me many times with his care and dedication to his patients. I am also impressed that he is investigating for celiacs when as I research more about it, I am seeing all the pieces fall into place.

My husband on the other hand has had a rough day today. I think he is grieving all the food he won't be able to eat. He told me "I pretty much can't have anything I like". He has sunk into a funk and he cooked spaghetti for dinner (kids begged for it). His mood is horrible right now, and I know its because he is frustrated. I tried to point out all the good foods that he can eat but he wont' listen right now. Part of me is afraid he won't take the diet seriously. But all I can do is just try to start making gluten free meals at home with all the wonderful foods he can eat and hope that he see's it isn't too bad. He isn't much of a potatoe eater (I LOVE potates), but he does like rice so I will have to start experimenting with recipes.

Thanks again for listening and I appreciate the words of support.

they do make RICE pasta!....good luck

[DavinaRN]

It's so hard giving up comfort food; I went to Olive Garden for lasagna the night before blood test and forced myself to eat EVERY bite, lol. It will be three weeks Thursday for me and I still have periods of wanting to cry, usually when grocery shopping or trying to decide what to cook for supper. Hopefully he will decide feeling better is worth it, I did, my stepdaughter who has mild food allergies (probably gluten intolerant also) would rather feel like she has stomach virus and live off zofran. All you can do is encourage and look up recipes to replace the food. DH isn't fully on board with me so at least half his battle is done since you are on board. My endocrinologist said being gluten free wont hurt you even if you don't have celiacs, just get your grains from non-gluten sources.

As to the kids, give their doctor a call and see if they will run blood test now based on husband being tested.

[nicoleashley]

Today he is much more optimistic than he was yesterday since we went grocery shopping together today. We also stocked up on apples, carrots, oranges, easy snacks to grab. We even bought some gluten free items to try out, a few pasta's, some crackers, and a bread mix which is in the bread machine now. We are trying to focus on the things that we already eat that we can have, so it's not like this huge drastic change. We bought pork chops, sweet potates, steak, chicken, brown rice, quinoa, and other things that we normally cook.

I went through the pantry and am going to be donating to the foodbank the things that contain gluten so that should make things easier too, if there is nothing tempting in there.

Does anyone know which soda's are ok to drink? We always have sweet tea, juice, and of course water at home, but we both love to treat ourselves to a soda and popcorn night with a movie at home. I know soda's aren't the best part of a healthy lifestyle, but if he already has to give up so much, I think he should still be able to enjoy a coke or mt.dew on occassion

[kareng]

All sodas are gluten-free. Exception might be a small batch craft root beer made with malt. So the main ones like coke & Mt Dew are fine.

[nicoleashley]

oh that is great to hear. Like I said, soda isn't good for us I know, but it is one of our vices, and when you are in the midst of giving things up, it is nice to be able to have something "bad" and comforting.

The gluten free bread is actually very good straight out of the bread machine, kind of bland, but the texture is much better than I expected. At least he can make a sandwich or toast a piece of bread for breakfast. And I will be able to make breadcrumbs as well. I also reminded my hubby that I can still make cornbread as I bought some gluten free cornmeal

[shadowicewolf]

He sounds a lot like i was. I had IBS for YEARS. I had to know where i was going, for how long, take pepto bismol before i left, and as it went on i had to wear a pad too just in case because there were soooo many close calls. I would cramp so bad before and after the incident. I also switched from "C" to "D" on occasion, but "D" was the worst for me.

I also develepoed a bad case of GERD later on.

It got to the point right before i was dx'd that i was throwing up and having "D" every day. I dropped 40lbs in little over a month (i kid not). I'd go into the doctor and i'd be told that it was all in my head because there was "nothing wrong" with me. I find it rather interesting that as soon as i went gluten free (about a week after i started) my IBS symptoms all went away along with the vomiting. Hmmmm....

I still deal with GERD. However, i'd like to think it is relatively controled through my diet (knock on wood, no major GERD issues lately). At one point, i was on nexium and another pill every day and it did nothing (was on that one he's on for a good while till the doc decided to up it). It eventually stopped helping me and started making things worse, so i went cold turkey on it (DO NOT DO THIS, it is ugggggh terrible). My doctor labeled me as intolerent to those meds. I now take tums (peppermint flavor) and drink water when its bad as well as eating something starchy.

I still deal with a bit of joint pain (when i was yonger i was tested for arthritis, never found any), but that is only when a storm is moving in or if i've been walking all day. Whereas before my knee would moan and groan at every little thing.

I will say this much: I was negative on the biopsy, positive on the TTG IGA test, positive for both genes of celiacs, and a positive reaction to the diet. As far as i'm concerned, I've got it.

[mommida]

Get the kids tested ASAP! If they are going through the scoping make sure there is a pathology request for eosinophil count.

I would take the house gluten free, you will learn about cross contamination.

Try not to be discouraged about not liking gluten free foods at first. It took about 4 months for my taste buds to adjust.

Have a gluten free snack bag on hand at all times! Even if you have to reort to a bag of chips, candy bar, or what you consider junk food.

Keep a food journal. It will help you find hidden gluten (things that you might think couldn't possibly have gluten like red licorice, soy sauce, seemingly plain things flavored with MALT (barley))

another food intolerance. (this may resolve after the gut heals on a gluten free diet)

READ every label, everytime! Even if you bought it and ate it last week.

Be patient. There can be gluten withdrawal symptoms. (like quitting an addiction) There is also a grieving period.

Welcome to the board and wishing a speedy recovery for your family!

[nicoleashley]

Well we got a voicemail from the doctors office today that said the bloodwork was NEGATIVE. So, yes I should be happy but why do I feel let down? I told my husband "I guess you can eat bread" but he actually WANTS to remain gluten free and try it for a while and see how he feels. We have a follow up appointment on december 4th, so at that time I am going to ask the doctor about getting him tested for more food allergies because maybe we are on to something. Maybe it's not celiacs but maybe there are food allergies or triggers that we can try to pinpoint.

[nicoleashley]

"Dental enamel problems stemming from celiac disease involve permanent dentition and include tooth discoloration—white, yellow, or brown spots on the teeth—poor enamel formation, pitting or banding of teeth, and mottled or translucent-looking teeth. The imperfections are symmetrical and often appear on the incisors and molars."

omg, I read this and it's like another piece of the puzzle. My husband doesn't drink coffee or use tobacco products, yet his teeth have yellow and brown spots/streaks on them that he has had since I've known him. They do NOT respond to whitening products and our dentist told him a few years ago that some people have "that type of enamel" and there weren't any whitening products that would work, the only thing would be for veneers or bonding. (which we've discussed but other expenses always take priority).

I feel like this is the PERFECT diagnosis, and it really would be better than some of the alternative diagnosis. Autoimmune diseases would require immonusuppresents which can cause so many other problems and make you at risk for infections. I would much rather remove gluten from our diet than have to take pills. And I hate to feel so crazy. I mean I know there is something wrong, his physical symptoms, the inflammation seen on the endoscopy and abnormal biopsy, and you can see his joints in his hands when they get red and inflamed.

I am a registered nurse, but I am not the type of nurse who thinks that I have every disease I read about. I am usually the type of person to brush off a problem and say "oh it's nothing, just move on". I worked in Emergency Medicine for 6 years and now I work critical care, so yes I do see a lot of things and I don't want to let something go that is going to cause my husband to be debilitated later in life. Could this still be a gluten issue or should I be looking at other issues? Should we try to hunt down a specialist in gainsville or orlando? Gainsville has a teaching hospital, but I just hate to subject the poor guy to more tests.

I have talked some of my coworkers ears off the past few days with all of this going on, and picked the brains of a few of the physicians. But we are a small town community hospital and these docs all pretty much don't know a lot about these sorts of things. And not all of the physicans are really 'talkative'. There are a few friendly ones that heard me talking about it and gave a few encouraging words or a little bit of info, but nothing that makes me feel any better about any of this.

Sorry for rambling, I am just so frustrated, I thought we might finally have an answer. The nurse on the phone sounded so cheery when she left her message that the blood test were negative, but I am left wondering, what exactly does the biopsy say? What kind of inflammation is it and what else could cause it????

[GFinDC]

..

It will help you find hidden gluten (things that you might think couldn't possibly have gluten like red licorice, soy sauce, seemingly plain things flavored with MALT (barley)) another food intolerance. (this may resolve after the gut heals on a gluten free diet)

...

Ooops, I agree with everything 100%, except the barley/malt part. Just the phrasing makes it sound like barley may not be a problem later. But it will be since it is one of the 3 grains that celiacs react to. I know you know this and it is just a finger/brain fart commnuication typing issue (like I get all the time). Just wanted to clarify for the newbie.

Tinkyada pasta may be a good choice. It is not too expensive and holds up well. Store bought corn meal mixes usually have wheat flour/gluten in them. So watch out for those.

Here's a thread on how to make gluten-free microwave buns or muffins. Quick and easy 2 minutes or less.

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

OK, I just saw your latest update Nicole. The testing is not perfect, so people can have celiac without "passing" the tests. It is not real unusual. There is also NCGI which has no tests right now. NCGI can cause severe GI symptoms also. The only test for NCGI are to stop eating gluten and see if there is improvement. Did hubby get good marks on his vitamins and minerals? If those vitamin levels improve after being gluten-free for 6 months then that is a good indication he shouldn't be eating gluten.

Non celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

[nicoleashley]

I knew what as meant, I mean I understand that malt comes from barley, which is a gluten containing grain.

[imjustgrandma]

Be aware there are false negatives to the tests. Gluten free is not going to hurt him, so try it. Give it at least a month, not a couple days.

Also, you may be very interested to watch the link I have provided.

-

Good Luck

P.S. My husband is also Celiac and Diabetic. He was sick for a long time also.

[AandGsmomma]

Just because the blood work was negative doesnt mean he is not celiac. If he doesnt produce enough Total IGA the test may be inconclusive. The gluten free diet will tell you if your right or not. I would suggest you have the dr run a vitamin / mineral panel to check for deficiancies.

Also, get a new toaster and condiments that could have gluten in them like peanut butter.

[ciamarie]

I would also suggest that you get printed copies of all test results, and reference ranges for the blood tests and post them here. Those who are knowledeable about such things will help decipher them. It's possible he's on the border line, or it shows 'equivocal' or something like that, but it could easily be a positive when taken with the biopsy results. It's also possible that it wasn't a complete 'celiac panel', I forget what the previous messages said in that respect.

It sounds like you're on the right track, don't get too discouraged.

[nicoleashley]

I am going to have my husband stop by the hospital and pick up the records for me tomorrow. I went down to medical records today and they informed me that I could not pick up records for my husband.... I don't think that is correct but I didn't feel like arguing with the lady today and I had to get back to my unit and take care of my patients, but he is going to get them tomorrow.

And no, I don't believe it was a full panel like I have seen posted here. I think there were only two lab tests ordered.

On a positive note, I ran into my husbands primary this morning and I casually said "hey doc, my husband finally got his GI workup". He asked how it went and I told him about the inflammation on the biopsy and then the negative blood work. He looked me in the eye and said "he needs to stop eating gluten". He seems to think the biopsy and symptoms are evidence enough, although he is the same physician who prescribed the welchol for the diarrhea in the first place, although my husband may not have been as descriptive of his symptoms in the beginning.

I told him we have cleared the gluten from our house, but we just started this week of course, but he is feeling better. He hasn't had any of what I call 'attacks', where he spends hours in the bathroom that interferes witho our daily lives or wakes up in the middle of the night with pain and diarrhea.

[nicoleashley]

Alright I have the biopsy and labs. Not sure if I should just post it here or maybe in the pre-diagnosis forum? Anyway, here it is for now:

LABS:

Tissue Transglutaminase IgA Ab RESULT: <1.2 REF RANGE (<4.0 Negative)

Duodenal Biopsy:

- Mild chronic duodenitis with increased intraepithelial lymphocytes.

- No evidence of villous architectural abnormality (see comment)

Comment: The presence of marked increased intraepithelial lymphycytes, despite the lack of villous architectural changes, may be associated with Gluten sensitive enteropathy. Recommend correlatinowith anti-tissue ransglutaminase antibodies.

[GottaSki]

Hi Nicole!

A couple thoughts:

The blood work is incomplete. Given the increased intraepithelial lymphycytes your husband should have had a complete celiac blood panel. The tTG-IgA is meaningless without a Total Serum IgA -- IgA deficiency would make any of the IgA based antibody tests inaccurate.

Do you know if there was more than one sample taken for celiac pathology? It looks like it may have been a single sample -- celiac damage can be spotty - especially in the early stages - multiple samples are important.

I'd suggest asking your primary or GI to order the rest of the celiac panel along with nutrient blood tests (if your husband hasn't had them yet) -- vitamin and mineral deficiency is another strong indicator of celiac and often the newly diagnosed will need some supplementation while healing.

Total Serum IgA

tTG-IgG

Deamidated Gliadin Peptide (DGP) - both IgA and IgG

Complete Metabolic Panel (CMP)

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

I do think it is a very good idea to remain gluten-free for at least three months (six would be better) to monitor symptom improvement - regardless of the negative blood test and early stage biopsy.

Good luck to you both