Need some Celiac advice

[DemonKnight]

Hi there,

 

 

I'm new to these forums and am looking for some feedback. So I've been having a ongoing battling story with Celiac disease since I've been diagnosed  and I'll give a little back story. Fall 2017 to spring 2018 I noticed my stomach was changing and I was going to the bathroom less and less. Spring of 2019 was when everything was completely different and I just about stopped going to the bathroom completely. I was being treated for just constipation at the time and the doctors put me through normal over the counter medications to help it. They did help for a while, but the struggle was always there and I always needed more and more things to help go. Fast forward to  Spring of 2020 and things once again came to a grinding hault, once again losing the ability to go to the  bathroom. My energy was sapped, weight was down about 8 pounds. Things went on more and with working with the GI Doctor who I started seeing for about 5 months, I was later officially diagnosed with Celiac disease in  July of 2020 through blood tests and an endoscopy.

 

Now the good news is that I have been able to lower my Celiac levels since starting a Gluten Free diet as of 07/2020. It's taken a lot of time to reduce the levels, and my doctor has been kind of surprised it's taken as long as they have.

 

My Celiac TTG ab, IGA levels were

 

6/2020 - 110

10/2020 - 56

12/2020 - 39

2/2021 - 23

 

So it took roughly 9 months for my levels to reach where they are now. The evidence is there that my diet is true gluten free, but for whatever reason it's taking a long time to Zero it. My main concerns are the following

 

**My weight has dropped and continues to drop drastically. Before Celiac must have activated in me, my weight was about 163 pounds during 2017/2018. It's funny because at this time I didn't want all this weight, but some of it  I figured was due to some medications I was on. I was always a slender/ but atheltic and built person. Usually lift weights and used to be a long distance runner. I didn't even eat that healthy or that much in general. Fast forward  to now and my weight is about 135/136 and I just keep dropping weight. I'm eating well 3 times a day, and also include some light meals in between lunch and dinner and one after dinner. It just doesn't make a difference, I keep losing weight.

 

**My other concern is my stomach and my bowel habits. They are still very sensitive. I've noticed I have to be very careful about what I eat. I need to eat mostly whole/natural foods. If any substantial saturated fats or high sugar content gets in there, it causes a reaction of some sort and shuts down my bowel habits completely the next day. I've tested it at this point and I'm pretty sure it's true. I'm getting plenty of water, plenty of fiber, and I keep in communication with my nutritionist.

 

So what do people think about this though? Is this weight loss natural at this point, because I'm pretty concerned. My GI doctor said we may have to change strategies if the weight lowers to 133 or below and he's mentioned some kind of steroid treatment being possibly in the cards. It just seems like even though the Celiac numbers are getting better, the stomach itself is almost worse. I'm getting pretty much nothing in terms of nutrients from the food I eat, and if I'm not careful I can go into very long stretches of constipation. Has anyone experienced any of these things and had them eventually turn around? I just keep thinking 9 months should be enough time, but maybe not I guess. I guess going two years consuming Gluten once it activated in 2017/2018 just wrecked things that badly in there?

 

 

[trents]

Are you still eating oats and dairy? About 10% of celiacs react to oat protein the same way they do gluten from barley, rye and wheat. And realize, I'm talking about certified gluten free oats. Dairy, for some celiacs, has been shown to cause villi blunting in the small bowel similar to what gluten does. We often advise people new to the experience of celiac disease to eliminate those two foods until they experience good healing in the small bowel and then add them back in as a challenge.

Recent studies have shown that most people who say they are eating gluten free are actually getting lower amounts than before starting the gluten-free effort but still getting more than they realize through cross contamination. This particularly true of those who still dine out. The fact that your IGA numbers are still elevated suggests that to me or that you are getting irritation from dairy or oats. There are also some medications that cause villi damage that mimics celiac disease. NSAIDS and some blood pressure meds are among them.

Are you taking any vitamins and mineral supplements to offset the nutritional loss you are experiencing? Have you been checked for Chron's?

[Scott Adams]

I just want to point out that there is an increased risk of T-Cell Lymphoma in those with untreated celiac disease, and this is usually diagnosed in the same year as a celiac disease diagnosis. I don't want to scare you, as this is a rare condition, but here are some articles on it, and you may want to discuss this with your doctor, as I believe weight loss is a symptom.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/cancer-lymphoma-and-celiac-disease/

PS - But re-checking your diet for any hidden gluten would also be important!

[DemonKnight]

6 hours ago, trents said:

Are you still eating oats and dairy? About 10% of celiacs react to oat protein the same way they do gluten from barley, rye and wheat. And realize, I'm talking about certified gluten free oats. Dairy, for some celiacs, has been shown to cause villi blunting in the small bowel similar to what gluten does. We often advise people new to the experience of celiac disease to eliminate those two foods until they experience good healing in the small bowel and then add them back in as a challenge.

Recent studies have shown that most people who say they are eating gluten free are actually getting lower amounts than before starting the gluten-free effort but still getting more than they realize through cross contamination. This particularly true of those who still dine out. The fact that your IGA numbers are still elevated suggests that to me or that you are getting irritation from dairy or oats. There are also some medications that cause villi damage that mimics celiac disease. NSAIDS and some blood pressure meds are among them.

Are you taking any vitamins and mineral supplements to offset the nutritional loss you are experiencing? Have you been checked for Chron's?

As for the oats I am guilty of eating oatmeal that is certified gluten free. I was aware of the oats situation, and I even think there was one period between testing where I tried staying away from it, but the numbers still showed the same pattern above so I've since been eating it 3-4 times a week. I kind of decided I needed the fiber from it in morning meals. . Actually, everything I eat pretty much has a gluten free label. I don't eat many things that don't. I've gone over my food diary twice with my nutritionist and we couldn't find anything suspicious. The diary is a different story. Perhaps you could go more into detail about that and what Villi blunting is. I mean as long as dairy or the oatmeal isn't triggering anti bodies, I guess it doesn't bother me too much unless it still in someway prevents healing to the intestines. 

I think the true test will be the next testing period I will be doing the end of this month. If the Celiac antibody numbers drop down how they have been doing, then it should be down in the single digits or pretty close to it and might give me more comfort I'm eating alright. 

Not taking any vitamins,but I do take probiotics to help with the stomach and also take fish oil pills for other reasons. I believe they did check for chron's when they did a colonoscopy, I'm pretty sure they said no on that one. 

[DemonKnight]

3 hours ago, Scott Adams said:

I just want to point out that there is an increased risk of T-Cell Lymphoma in those with untreated celiac disease, and this is usually diagnosed in the same year as a celiac disease diagnosis. I don't want to scare you, as this is a rare condition, but here are some articles on it, and you may want to discuss this with your doctor, as I believe weight loss is a symptom.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/cancer-lymphoma-and-celiac-disease/

PS - But re-checking your diet for any hidden gluten would also be important!

Thank you for sending me that. I'm going to bring this up with him when I talk to him this month and see what he says. 

[trents]

The villi are microscopic finger-like projections that protrude from the mucosal lining of the small bowel. They are responsible for creating a lot of surface area for the absorbing of nutrients. This is where nutrient absorption happens or doesn't happen. Constant inflammation causes damage to the villi which reduces the efficiency of nutrient absorption. The protein we know as "gluten" causes inflammation in this area and for some people, the protein casein in cow's milk products produces the same effect. Gluten, and for some, casein is interpreted as an invading protein so the immune system produces certain antibodies to fight the invader and it is this battle which in turn causes inflammation. So inflammation is a good thing in limited short term scenarios when in response to a legitimate invader but for celiacs, the immune system has been programmed to fight some good things, things which aren't otherwise a threat. The blood antibody testing apparently doesn't distinguish between antibodies to gluten, casein or whatever is triggering the inflammation. The antibodies just are markers for inflammation in that area the body period. At least, that is my understanding.

Edited April 5, 2021 by trents

[Oldturdle]

I am sure your nutritionist has calculated the calories you are taking in and made sure that you are getting adequate amounts to cause weight gain.  In my experience it is sometimes hard to get enough daily calories when you are eating only whole foods without dairy.  Also, what do I know, but I thought that that diarrhea implied poor absorption, and constipation implied very sluggish bowels, with lots of time for absorbtion.  My sister says she is lucky to have one bowel movement a week.  She refuses to get tested for celiacs, because she does not want to give up gluten.  I am a diagnosed celiac, though, so it is certainly possible she has it also.  Her weight is normal, though.

[MADMOM]

i have been on gluten free diet since jan and initially lost 6-7 pounds mainly i felt anxious and scared!  i have since gained all the weight back  and have been feeling so much better until last week i think i got some cross contamination although i don’t know from what since i don’t eat out anymore and everything i do eat is “supposedly” gluten free per label - i’m waiting on another blood test for another month just because i’m sure i’ve set myself back a little learning how to eat properly - my dr was looking for a 50 point drop in my levels - 🙏🏻i pray - my question regarding dairy is - is it the lactose that bothers the small intestine because i’ve been on and off with lactose free milk almond milk and lactose free yogurt and i have no reaction - i’m assuming it’s ok to have lactose free if i don’t have any gi issues.  what’s say you?  

[Kate333]

Going from a high TTG level of 110 at diagnosis down to 23 in 9 months isn't anything to be worried about.  In fact, since the "normal" TTG level is 14 or below, you are almost there.  (BTW, I went from a high of 224 at diagnosis to 28 three months ago, when I last had a blood test.  I didn't begin the STRICT gluten-free diet until March 2020, so it took me about a year to reach 28.  I, too, was a bit obsessed at first about numbers and progress, but my GI doc said not to get hung up on specific #s, as long as the trend was progressing down with each subsequent blood test, he was happy.  He also said that people are different in their individual response to the gluten-free diet (many people, esp. older folks, can take up to 2 years+ to heal). 

At this point in the game, your primary concern should be avoiding "cross-contamination" potential from oats (and other foods)--even those labeled "certified gluten-free" which, IMHO, can't be entirely trusted because they are often grown, harvested and/or packaged along with other G containing foods.  I would also avoid eating out--even at restaurants touting "gluten-free" menus.   Make those 2 small changes for a few weeks and see if your digestion improve.

If not, you might want to ask your GI doc about other non-G factors that could possibly be messing with your digestion (IBS, SIBO, or anxiety).  I know stress is a BIG indigestion factor for me, esp. since the pandemic.   

Best of luck on your healing journey!

[MADMOM]

wow my level was 156 at my first appt and diagnosis - i am waiting to follow up bloodwork at 4 months - hoping it drops - my dr was looking for a 50 point drop!!  is this realistic?  

[DemonKnight]

Some of this is good news then. I'm glad to see another person with a similar time frame on the Celiac antibody numbers. My doctor wanted it zeroed out by now, but when I did some reseach those antibodies have a half life of six months. So my results tend to reflect that I believe with close to half always disappearing. To the poster above Madmom, yes due to the half life I would assume you will drop at least 50 points if you're on a true gluten diet. For now I'm going to keep having diary and the gluten free oatmeal and then reevaluate at the end of this month. If the numbers don't drop like they are supposed to, then I'll know those may very be possibilities. 

 

I'm just very upset about the weight situation, and even though my antibodies seem to be dissapearing, my body continues to get trashed in the meantime. My nutritionist does want me to eat more, closer to a 6 meal plan a day, but it's just not an easy thing when you are constantly constipated. It's just wishy washy at times and when you find yourself in stretches of not going to the bathroom, the last thing you want to do is keep eating. Even so I did incorporate 2 smaller healthy snacks/meals in to supplement my 3 meal day and started going back to the gym. Didn't even do anything, as I continue to just lose weight.

I do avoid eating out as well. I only eat from my own kitchen at this point until things normalize. I've taken very very few risks. You are right Kate333 though, it's scary knowing things can say gluten-free but most likely aren't always prepared in gluten free environment. For now though with my numbers dropping, I'll assume it's been safe so far with the choices I've made. I eat the same things every week. 

 

 

[JD-New to Celiac]

Hi DemonKnight - I am in no way an expert. I have just read quite a bit and I continue to learn as I go along. Like you when I got incredibly sick last summer I started to lose weight...45 pounds in a matter of two or three months. I met with a nutritionist but I found that each of us need to learn what our bodies will tolerate. During my initial diagnosis I also learned I had six other food allergies so now I basically eat plant based foods with little or no flavoring as I can't tolerate onions, garlic, etc. Eating a plant based diet has left me with few options and I have to eat quite a bit in order to maintain my weight. I eat six and seven small meals a day and like you basically the same foods. Heed the advice of others on this blog and consider doing away with oats and all dairy. I could not digest them and they made me sick even after going off gluten. I also can no longer do soy or eggs and I am allergic to fish. I did an elimination diet and food diary to discover what works. I have thrown out SO much food over the last ten months as I buy it thinking I can eat it and get sick. For now I do a plant based shake four times a day. I've gotten used to Orgain unsweetened, vegan, lactose free, unflavored protein powder. Yes, yuck, but I don't believe I will be on this forever. Only until I heal internally. I do add a turbinado sugar which I seem to tolerate and it adds some sweetness. The good news is I've gained back about 15 pounds from about 140, which was my lowest weight (I am 6 feet tall). Also, as far as numbers dropping, I think most if not all will not agree when I say that it takes time for the numbers to go down. My doctor said the same to me that my level should have been lower by that time and told me I was still consuming gluten, which cannot be true. I was at 250 ttg iga and four months later a reading of 42, with the normal range according to the lab less than 5. So, I am not there yet. I will end here with a note on the constipation challenge you are having. I was also the same prior to eliminating all foods I am allergic to and eliminating gluten and it was the absolute worst. I no longer have that issue. I am not sure if that would be the same for you with a change of diet, but I do wish you all the best on your road to recovery. We have all been there and we all have different symptoms and reactions to the foods we eat; you just have to find your ideal mix while you heal.

[knitty kitty]

@DemonKnight said....

"If any substantial saturated fats or high sugar content gets in there, it causes a reaction of some sort and shuts down my bowel habits completely the next day."

If you have problems digesting sugars and fats, consider supplementing with thiamine.

Thiamine deficiency can cause weight loss, Gastroparesis, and constipation. 

You need more thiamine if you are an athlete or work out, if you are exposed to hot or humid weather, and if you've been ill.  

Thiamine is needed to turn those fats and carbs into energy for every cell in your body to function properly.  

Without enough thiamine, your body uses a thiamine saving shortcut....your body burns your own muscle as well as any fat stored.  This is why you can't gain weight.

(Some people can get an opposite problem in thiamine deficiency and store excessive amounts of fat and water.)

High dose Thiamine is needed to get thiamine into the cells.  More than 500 mg of thiamine HCl needs to be taken every day for several months.  Some people need to take more.  Thiamine is safe and nontoxic.  Any excess is excreted in urine.

I lost sixty pounds in a month.  My doctors were clueless.  After much research, I found high dose thiamine supplementation stabilized my weight loss and improved my health.  I take benfotiamine, allithiamine and thiamine HCl along with magnesium which helps thiamine work, and a B Complex and vitamin C.

Thiamine also helps regulate your immune system.  Thiamine helps tell the immune cells to chill out.  Your antibody titers will go down if you've got plenty of thiamine.  

[DemonKnight]

Thanks JD, yea I have an appointment set up next month for Allergy testing. I'm behind in that regard and it's something I should have already got done. That is a a heal of drop though in the levels btw. That's pretty good. It looks like you kind of went all out on your diet to achieve that and getting the digestion under control.

[DemonKnight]

16 hours ago, knitty kitty said:

@DemonKnight said....

"If any substantial saturated fats or high sugar content gets in there, it causes a reaction of some sort and shuts down my bowel habits completely the next day."

If you have problems digesting sugars and fats, consider supplementing with thiamine.

Thiamine deficiency can cause weight loss, Gastroparesis, and constipation. 

You need more thiamine if you are an athlete or work out, if you are exposed to hot or humid weather, and if you've been ill.  

Thiamine is needed to turn those fats and carbs into energy for every cell in your body to function properly.  

Without enough thiamine, your body uses a thiamine saving shortcut....your body burns your own muscle as well as any fat stored.  This is why you can't gain weight.

(Some people can get an opposite problem in thiamine deficiency and store excessive amounts of fat and water.)

High dose Thiamine is needed to get thiamine into the cells.  More than 500 mg of thiamine HCl needs to be taken every day for several months.  Some people need to take more.  Thiamine is safe and nontoxic.  Any excess is excreted in urine.

I lost sixty pounds in a month.  My doctors were clueless.  After much research, I found high dose thiamine supplementation stabilized my weight loss and improved my health.  I take benfotiamine, allithiamine and thiamine HCl along with magnesium which helps thiamine work, and a B Complex and vitamin C.

Thiamine also helps regulate your immune system.  Thiamine helps tell the immune cells to chill out.  Your antibody titers will go down if you've got plenty of thiamine.  

This is very interesting and I am going to look into this more and bring it to my Doctor's attention. Were you able to get a pill form for Thiamine or did it have to be the power form to get those high amounts. I haven't been tested for a lot of B nutrients except B-12 which  I believe was fine. 

[knitty kitty]

Benfotiamine, Allithiamine and thiamine HCl are available through stores on line, like at Amazon.

I take several smaller doses throughout the day and with meals for a cumulative high dose total over the course of the day.  

Blood tests for the B vitamins are not always accurate.  Blood tests for thiamine often reflect how much thiamine you've consumed in the past twenty-four hours.   You can have a deficiency in body tissues whilst having "normal levels" in the blood.  Studies have found that taking high dose thiamine can still have beneficial effects even though the blood test doesn't show a deficiency.  

Keep us posted on your journey.

[DemonKnight]

Will do. Thank you

[DemonKnight]

What are people's thoughts on Digestive Enzymes btw? Is there a chance this would help out with the consistency of bowel movements and the constipation. Or perhaps with breaking down some food or helping with foods that have fats and sugars in them as well? 

[Scott Adams]

I still eat out once a week or so, and always take GliadinX (a site sponsor), which are AN-PEP based enzymes that have been shown in multiple studies to break down small amounts of gluten in the stomach, before it reaches the stomach. This enzyme would not work as a more general enzyme for other foods, and seems to target gliadin.

[Scott Adams]

PS - For everything else one member often recommends Berberine supplement 1500 mg a day for 3 weeks.

[DemonKnight]

Thank you Scott, I'm going to give these a look as well.