"You can survive this. Talk to others that have"

number4 posted 9/20/2020 19:20 PM

I've been sitting on this for a couple of weeks - D1 had a colonoscopy and upper endoscopy last month. Bloodwork done before the procedures did not indicate Celiac. But biopsies from the upper endoscopy show she does. So her GI doc said to spend a few days eating a ton of gluten, then get bloodwork done again. Then she is to go gluten-free for 4-6 weeks to see what happens. So she's just started the gluten-free protocol. Her second round of bloodwork did not show any nutritional deficiencies. Not sure about the Celiac marker (forgot to ask her - that result was coming after the other results). She suspects the only way they're going to be able to tell if she truly has it, is going to be by doing another upper endoscopy after going gluten-free to see if the villi are healing.

She has some symptoms that are consistent with Celiac, and some that aren't. She has actually had weight gain over the years, despite having what she thought was IBD (always runny stools); and again, she has no nutritional deficiencies. But she has thinning hair - this was a kid who, when she was young, I thought we were going to get charged extra when I took her for a hair cut because her hair was so thick (straight, but THICK); she also was having some issues with GERD until she lost some weight with effort; she also has been diagnosed with arthritis in one of her digits; also has anxiety - the arthritis and anxiety, I had always attributed to genetics since my mom had RA really bad (although I don't). Oh, she also was diagnosed with microscopic colitis (which I had once when I was titrated up on an SSRI too quickly). So she definitely has a cluster of things going on, which I always sort of dismissed as due to anxiety, but now I'm rethinking everything in response to this upper endoscopy.

I feel so bad for her - she's coming out to see us in a couple of weeks - I think between getting engaged and getting this diagnosis, she just needs to see mom and dad. She will be getting COVID tested just prior to coming, and quarantine between the test and traveling. She's also flying first class on a plane that has the pods so she is fairly removed from anyone around her.

With these diagnoses, and my genetic mutation (although neither of my kids inherited my genetic mutation for Lynch Syndrome), my younger daughter is now being advised to have a colonoscopy and upper endoscopy. When she got genetic testing, although she didn't test positive for my mutation, there was a questionable mutation of another gene that could increase her chances of certain cancers. So they will check her for Celiac, too.

Adlham posted 9/20/2020 20:57 PM

Is it possible that it is a gluten allergy vs celiac?

I only ask because my oldest is allergic to gluten. Always has been. But she doesn't have celiac's.

She does a rotation diet so she only occasionally eats it and seems to do ok. It doesn't affect her intestines, which is the big difference.

Her big gluten reaction is to break out in a hideous rash.

I do not envy you. She was 3 when she was diagnosed with multiple food allergies. It was really hard.

Sending good thoughts your way.

number4 posted 9/20/2020 22:16 PM

Yea, that's what I was wondering - if it's perhaps a gluten allergy. She called tonight after I started this thread. She said she is already feeling better being gluten-free for not even two weeks. I guess it will take her some time to see what other symptoms might change once she sticks with it longer. I just don't know if gluten allergies can cause the villi changes in the small intestine.

She does have allergies, and has been getting allergy shots for a couple of years, although she had to stop this spring when COVID hit. But her allergies are environmental, and cats. I don't think her allergist has tested for food allergies; if they have, she didn't mention it. D1 is the one who breaks out in rashes when exposed to allergens, but D2 hasn't. D1 does have psoriasis in her scalp, though. It will be interesting to see if that goes away.

[This message edited by number4 at 10:17 PM, September 20th (Sunday)]

tushnurse posted 9/21/2020 07:37 AM

Not sure about the Celiac marker (forgot to ask her - that result was coming after the other results). She suspects the only way they're going to be able to tell if she truly has it, is going to be by doing another upper endoscopy after going gluten-free to see if the villi are healing.

OK here's the deal. The blood test can come back positive and only have a sensitivity. An Endoscopic biopsy is truly the only definitive test on Celiac. If it was positive then she has it to some degree. I would strongly encourage her to remove gluten from her diet long term, if she is a young adult that may be difficult to do, but I would suspect that in 6 months she would notice she has more energy and her hair and nails will improve, and she will have less headaches, and general aches and pains.

Even though she doesn't have any nutritional deficiencies does she have anemia? (Anemia is the number one way this gets diagnosed in young adults prior to everyone being "Gluten Aware").

There is a definite link between processed foods w/ gluten and preservatives and inflammatory diseases as well. If you Google the AIP diet you will probably get a million hits, of info on it. It is very popular in the RA community and some people swear it truly effects their disease and some even find they can get totally rid of their pain by following a very strict limiting diet of no gluten, no meat, no nightshades, and no beans. But for me that leaves not a lot to eat.
Personally I have found some improvement in my RA when I don't eat gluten for a period of time, I am just not disciplined enough, or don't see enough of an improvement to go hard core.

Adlham posted 9/21/2020 11:43 AM

It would be worth the time for your daughter to get tested for other food allergies if she hasn't.

Other food allergies can impact the villi. I did a little research.

It sounds more like celiac, but my kid has had food allergies all her life and they've changed.

She is no longer allergic to dairy but has developed a nut allergy severe enough that she carries Benadryl and an epi pen at all times. She could be across the room from peanut butter and start reacting.

Which is a terrifying thought.

number4 posted 9/21/2020 17:56 PM

If it was positive then she has it to some degree. I would strongly encourage her to remove gluten from her diet long term, if she is a young adult that may be difficult to do, but I would suspect that in 6 months she would notice she has more energy and her hair and nails will improve

I guess I didn't realize you could have it 'to some degree'. The only person I know who has Celiac must be absolutely adamant about not having an iota of gluten or she gets violently ill. She has to call ahead to restaurants to make sure they know ahead of time what she will be eating so it can be prepared without cross-contaminating with gluten.

It'll be interesting to see about her energy - when she's around us, her energy is decent. But the hair... yea, will it come in thicker? We'll see. Oh, I'd give anything to have her nails - they are as healthy as they come.

Even though she doesn't have any nutritional deficiencies does she have anemia?

No, her iron was fine. Interestingly, my iron bloodwork recently showed I was anemic. My ferritin was 6! And my hemoglobin was 11.6. We know I'm not bleeding anywhere because I just had a colonoscopy and upper endoscopy. My Gi thinks it's because of my PPI use - he thinks it's preventing my body from absorbing the iron it's getting through food. We are working on weaning me from the PPIs... VERY slowly. In the meantime, I am taking Slow FE. But no, all her bloodwork was normal - which is a good thing.

WhatsRight posted 9/21/2020 18:08 PM

I just have no earthly idea what all of you al are saying, and I won’t pretend to! Just wanted to drop in to say that I sure do hope you are successful in finding what the issue is, and that is the least invasive issue that it could possibly be.

Lots of hugs and prayers your way!

tushnurse posted 9/22/2020 09:23 AM

My Gi thinks it's because of my PPI use -

Just a slight T/J - My H has SEVERE reflux and Barretts. He cannot go w/o a PPI. He takes and has taken Iron daily for years. He also benefits from the side effects from it, given he is prone to diarrhea, it helps slow things down for him.
Make sure you stay in communication w/ your GI dr, as you wean, and if reflux comes back, do not just live with it. It can cause significant issues.

number4 posted 9/22/2020 13:11 PM

The hope is that we can lower the amount. I was on 40mg. of Nexium, twice a day a couple of years ago, and had been for many years. I had an upper endoscopy four months after DDay, and my GI said she saw signs of Barrett's, but in the end, the biopsy said it wasn't.

Then almost a year later we moved across country, and my new internist ultimately suggested I try to cut back to a 40mg. at night, and a 20mg. in the morning; I've been doing that for almost two years, and have mostly done OK. When I had my last upper endoscopy in July, everything looked good - no visual sign of Barrett's and biopsy was clean. So with that good news, my internist is now recommending I move to a 20mg. in the AM, then PM, too. My GERD issues are 95% related to eating too late, or eating too much, then trying to go to bed. We have a Sleep Number bed with a flex top, so I can raise the head of my head independently from H's side, and that seems to make the difference. I almost always start off the night with my head raised about 45°, then at some point during the night, will lower it some, but I never go flat.

I also have a prescription for Carafate, and, if things get really bad (meaning, I have breakthrough at bedtime, have taken Tums and still need some relief), I can take it. That happens maybe 2-3 times a year. So by finding a way to manage it, I'm ready to try to cut back on the PPI. I don't think my internist is saying I have to get rid of it completely, but maybe just reduce the use. And yes, if I have bad breakthrough, I won't hesitate to increase it. My therapist told me it took her two years to get off PPIs. I've just really learned to manage my symptoms through eating habits. And because of my Lynch diagnosis, I will get regular upper endoscopy screenings.

Unfortunately, losing weight has never made a difference for me. I've lost about 25 lbs. since January, and I still have to be careful.

D1, on the other hand, noticed a difference in her GERD when she lost weight. I'm happy for her!

Questioningall posted 9/26/2020 21:36 PM

My oldest DS was diagnosed with celiac when she was 26. She was anemic and her doctor had a family member with celiac, so she had DD Take the blood test (positive) and then to a GI doc, who did an endoscopy. She also suggested the rest of us get tested and our blood tests were negative, though I know I’m gluten intolerant because I feel ill when I eat it and fine when I don’t. DD was upset because she couldn’t drink beer anymore and had to stop taking communion at church. (The wafers can be low gluten, but must have some wheat.) She switched to gin and tonic and learned to cook. Lots of grocery stores have gf items and a lot of things never had gluten, so it’s not a terribly difficult lifestyle, at least not around our area. Restaurants can be tricky, so you need to be careful eating out.

number4 posted 9/27/2020 15:08 PM

I asked her last night how the gluten-free was going - she has found some bread by a company called Schar that she likes and it is completely gluten-free. She's coming to visit in a couple of weeks, and we checked our grocery store and they carry it, so we can get some for her.

She said her persistent diarrhea for several years has disappeared. She is so thankful for that, that she is very accepting of the diagnosis, whatever it is. I asked her if she noticed anything different with her allergies, and she said no. It'll be interesting once she's gone gluten-free for several months, and has a small amount, what it will do to her.

I am grateful that she is not anemic, or has any vitamin or nutrient deficiencies. That's leading me to believe she's just gluten sensitive, as opposed to having Celiac.

Glad your daughter has found some substitutions that work for her. My daughter likes beer, but usually prefers wine. I just have to imagine, when they go gluten-free and feel so much better, that it's easier to turn down stuff that has it in it.

Questioningall posted 9/27/2020 19:06 PM

There’s an app called Find Me Gluten Free that’s helpful for finding restaurants and bakeries, too.

number4 posted 9/27/2020 21:34 PM

ooooh, thanks for the app recommendation. I'm sure D has already found it, but we can use it when she comes to visit. Not that we'll go out to eat, but we can order in the nights we don't cook.

She did mention she found a local pizza place near her that has a gluten-free pizza that she really likes!

cass posted 10/4/2020 13:36 PM

I'm sorry she's going through this. It's not easy initially but she will do well on a gf diet.

I've been coeliac since aged 38, now 62. My brother's been diagnosed since babyhood and he's 65. My sister and her son are gluten sensitive so can tolerate a small amount of gluten now and then but can't overdo it whereas my brother and I can't tolerate any gluten at all. It makes us quite ill and for long periods.

It's such an unknown area and there are degrees of sensitivity. I was never diagnosed by endoscopy which came back inconclusive but lost so much weight, loose stools, headaches, muscle and bone pain, fuzzy mindedness, also incoherent and inarticulate after eating gluten. Insomnia and fatigue were both awful too and energy levels were nil.

It's not so hard to live without gluten but it takes time to adjust and to the loss of normal eating. I'm in Europe where it's well known now and eating out is not that difficult anymore as most chef's know the score.

It's a Celtic disease (is there Celtic heritage in the family?) and some stats say that one in 140 in US are coeliac and one in 120 in Ireland and Scotland have the disease.

Wishing her all the best

number4 posted 10/4/2020 15:31 PM

Thanks, cass. I know she's feeling better, so that's motivation to stay with the program. It'll be interesting, over time, to see if any other things she has going on improve. Glad to hear you adapted well, although I know how hard it is to eat out. There are a lot of GF products out there now.

I guess it's interesting that there's sort of a continuum of gluten sensitivity, from you and your brother, to your sister and nephew. As I said, the only other person I know who has celiac, gets violently ill if she mistakenly gets some - sounds like your reaction.

Also interesting about the Celtic heritage. We've (D1 and I) have both done 23 & Me - heritage comes back with mostly French and German, and almost all is northwest Europe. D2 and I are both redheads and fair skin.