Newly Diagnosed, Depressed & Confused

[Kate333]

Hi everyone.  I was diagnosed with "possible" celiac late last year when I had a routine blood tests after experiencing a few days of sudden bad indigestion unresponsive to OTC remedies or bland diet.  (TTG) showed G antibodies (224).  However, my subsequent endoscopy/biopsy was "normal with no celiac sprue" and "mild gastritis with no significant pathological changes" in the duodenum.    To be on the safe side and as advised by my GI doc, I immediately began a gluten-free diet last fall (which I continue even today).  Although all my post-gluten-free diet blood test results have shown G antibodies have dramatically and steadily declined (to low of 73 in Feb.), my last test (this June) showed G antibody level of 81, slightly above the Feb. reading, so it seems to have stabilized at that abnormal level no matter my diet.

Questions:

1.  Is it unusual to still show abnormally high (81) TTG blood test readings almost 6-months after beginning a gluten-free diet?  Or does it take longer to flush all the G antibodies from the system once on this strict, gluten-free diet?  This year, I have been cooking MOST if not all of my food at home from scratch (fresh veggies, fruits, meats).  The only "processed/packaged" foods I have eaten are lunchmeats, canned beans but ONLY ones clearly labeled "Gluten-free".

2.  Does problem with G intolerance ALSO cause (or "trigger") IBS and other food intolerance issues?  For example, I notice I can no longer safely digest ANY dairy (ice cream, even yogurt, cheese).  Also, many healthy low-fat fruits, nuts, and soy have "suddenly" become issues whereas I used to be able to easily handle them before the initial TTG test.  Just wondering whether I ALSO have IBS in addition to gluten issue because, despite my rigid gluten-free-protocol, I STILL have D, C, and gas almost daily (all symptoms of IBS), esp. since March (the pandemic)..

3.  Any tips for handling the emotional stress, roller-coaster of this diagnosis, dietary limits, changes?  I am over 60 and while I have always had what I call a "sensitive" stomach and low-grade anxiety, but I have never encountered anything as this kind of chronic, continued indigestion... I admit I am pretty shocked, depressed by this diagnosis and the drastic diet limits/changes required, esp. during the CV pandemic which gives us all ANOTHER (likely lifetime) health issue to worry about....I have literally become obsessed about every meal (Is it "safe" or not?) and have become downright OCD about washing EVERYTHING I purchase🤕.  At first, I didn't feel too bad because I thought I would only have to give up OBVIOUS sources of G like bread, rye, barley (no big deal--didn't miss them).  Then I learned more about the "pure" gluten-free diet, how many foods (even meds, toothpaste!) contain "hidden" gluten, "cross-contamination" issues, and how many food companies even falsely advertise "gluten-free" on packages and the confusing, conflicting advice re: low FODMAP diets.  Too overwhelming to handle all this--at ANY age!! 

I guess I am just hoping for some "reassurance" here.  Thanks for patiently reading such a long note and responding...

Kate

 

[GFinDC]

Hi Kate,

Welcome to the forum!

I'll tackle a few of your questions.  Yes, celiac disease can cause GI symptoms when eating just about any food, not just gluten foods.  The damage to the small intestine interferes with proper operation of the digestive tract.  Foods are not digested and absorbed properly, bacterial flora can get out of whack, and enzymes that help digest foods and signal the gall bladder to release bile may be missing.  Bacteria can overpopulate and produce symptoms also.  An irritated gut is an unhappy gut.

Once all the gluten eaters stopped trying to ruin my life by eating pizza, donuts and bagels around me things were fine.  Actually, they never stopped, but I stopped caring about that.  It may take some time to adjust but it can happen.  Getting used to eating differently is either a chore or an adventure.  Sometimes it's both though.  Just breaking food habits can go a long way towards making gluten-free eating easier.  We have to be more aware of our diet than most people, but we can end up eating a healthier diet than most people too.

Getting over celiac damage can take 18 months or more.  It's not a quick process for some of us.  Eating mostly whole foods is definitely the way to go.

Depression and anxiety can be related to lack of adequate nutrition, like B vitamins, vitamin D etc.  Ongoing physical symptoms can also trigger depression so it's a double whammy for us.

Edited June 25, 2020 by GFinDC

[cyclinglady]

Welcome!  

GFinDC has given you excellent advice.  Healing does take time.  Expect setbacks.  And who would expected a pandemic?  The added stress is huge and can impact your health.  
 

Try not to worry about the diet.  I know, easier said than done.  I have yet to see a toothpaste with gluten.  Know that most gluten-free labeled foods are really gluten free.  Like 99%!  Subscribe tot the gluten-free Watchdog.  It is like a tiny Consumer Reports.  They test foods that subscribers request, so at least you have more confidence that an OTC drug like Zyrtec or that can of beans you consume is gluten free.  
 

 You might have other issues, but right now, focus on healing from celiac disease.  Be patient.  It takes time.  

[Kate333]

Thanks folks for your kind, encouraging replies.  Much appreciated!

[DJFL77I]

My diagnoses in regards to the endoscopy was exactly the same as yours...    "mild gastritis with no significant pathological changes"....

My other symptoms that you talked about in your other thread about some dizziness, off balance feeling, etc...  are also the same as yours....

I was recently diagnosed..  and have been off Gluten for almost 2 weeks... 

[Awol cast iron stomach]

On 6/24/2020 at 7:01 PM, Kate333 said:

Does problem with G intolerance ALSO cause (or "trigger") IBS and other food intolerance issues?  For example, I notice I can no longer safely digest ANY dairy (ice cream, even yogurt, cheese).  Also, many healthy low-fat fruits, nuts, and soy have "suddenly" become issues whereas I used to be able to easily handle them before the initial TTG test.  Just wondering whether I ALSO have IBS in addition to gluten issue because, despite my rigid gluten-free-protocol, I STILL have D, C, and gas almost daily (all symptoms of IBS), esp. since March (the pandemic)..

3.  Any tips for handling the emotional stress, roller-coaster of this diagnosis, dietary limits, changes?  I am over 60 and while I have always had what I call a "sensitive" stomach and low-grade anxiety, but I have never encountered anything as this kind of chronic, continued indigestion... I admit I am pretty shocked, depressed by this diagnosis and the drastic diet limits/changes required, esp. during the CV pandemic which gives us all ANOTHER (likely lifetime) health issue to worry about....I have literally become obsessed about every meal (Is it "safe" or not?) and have become downright OCD about washing EVERYTHING I purchase🤕.  At first, I didn't feel too bad because I thought I would only have to give up OBVIOUS sources of G like bread, rye, barley (no big deal--didn't miss them).  Then I learned more about the "pure" gluten-free diet, how many foods (even meds, toothpaste!) contain "hidden" gluten, "cross-contamination" issues, and how many food companies even falsely advertise "gluten-free" on packages and the confusing, conflicting advice re: low FODMAP diets.  Too overwhelming to handle all this--at ANY age!! 

I guess I am just hoping for some "reassurance" here.  Thanks for patiently reading such a long note and responding...

Welcome Kate. I can speak on part 2 & 3 of your questions. I had additional intolerance s 13, so yes many of us have other intolerance s to foods or additives/ingrediants. My body still prefers I make my own gluten-free baked goods vs gluten-free store bought. I slowly was able to add additional foods and some gluten-free processed foods after 2 years and 4 months. In the end I have 3 food intolerance s now and I do avoid most products with complex additives/ingredients. I was misdiagnosed with IBS on symptoms only for 2 decades before my intolerance was diagnosed. The team that diagnosed me with gluten intolerance did not find IBS. I had to stay whole foods based for 2 years. I started by blending foods initially after diagnosis to make it easier on my digestive tract. In time I moved on to paleo and then was able to add in some gluten free grains. So if I had particular symptoms initially or difficulty digesting that was off the list. I thought of digestion and inflammation as the cornerstones to my post diagnosis diet.

Being focused on the diet and hypervigiliant about gluten cross contamination related to the fear of the pain coming back in my book. We don't want to experience it again. A former co worker once shared her OCD story with me thinking I maybe too. I had to explain to her that actually the reason I washed my hands so much was gluten not germs. I never shared her revelation with other workers. I think she felt awkward after, having realized I was not OCD. I am sure it confused people when I was assigned to the kiddo crumb area I was diligently washing hands. I'm also surprised people paid that much attention to me. Even when I shared my intolerance with people some people just don't believe it or suggests other diagnosis as some people just have a difficult time accepting our situation. 

For products sometimes it is worth it to use one's labeled gluten-free initially. You do pay more, but the peace of mind if gives you early on while healing in the early stages is helpful. My immune system was quite trigger happy so the less I exposed it to the better I felt. I know one Dr mentioned FODMAP to me, but that didn't fit my experince. I went with my immunologists food dairy/food eliminatiom/ re-introduction method to discover what to keep or ditch from my diet.

Best wishes on your gluten-free healing path.

 

 

[Kate333]

Thanks AWOL and others.  I have pretty much ditched ALL packaged food, even labeled gluten-free (with the one exception of gluten-free-labeled brown rice because I want to get some fiber in my diet).  I mostly eat only meat, chicken, fish (bought raw and cooked at home by me), eggs, fresh fruits and veggies, which I thoroughly rinse before eating--CV paranoia as well as G...:).  That kind of diet simplicity reduces my time in stores, hunting for "gluten-free" labels, and the extra expense of gluten-free products.  I don't bother at all with gluten-free packaged, baked goods. (I tried a few items and, IMO, most of this packaged stuff on the gluten-free aisle taste like compressed sawdust😝) and--like non-gluten-free food--it's so full additives, I wouldn't feed it to a dog. 

Weird Q: Does anyone know whether fresh red meat/beef/chicken/turkey/ham could contain trace gluten from animal feed or pasture sources?  It's no secret that farms, in general, are not very clean, sanitary places and that farmers ROUTINELY use antibiotics and other "fillers" to "fatten" (via feed or injections) these animals to maximize their sales profits.  If farmers feed animals wheat, barley, rye (in addition to the usual corn, grass, oats) or it inadvertently gets ingested by animals, isn't it at least POSSIBLE for people who buy, consume meat to get indirectly exposed to G the animals have eaten?  I just wonder because my tTG (gluten) test numbers have not fallen back into the normal range after 6 months on a gluten-free diet.  I would prefer to just eat vegetarian, but meats are a good source of protein, don't seem to trigger my gut, and I assume bean production/harvesting is also a cross-contamination risk because many farms grow/harvest/package more than one crop (eg. beans AND wheat, barley, or rye)...

Thanks for reading and any replies.

    

[knitty kitty]

Kate333, 

Welcome to the forum!

Fresh beef does not contain gluten. Here's an article that you might find interesting...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622696/

I'm sure other meats are gluten free as well, however, you mentioned you sometimes ate lunchmeat.  This may be problematic.  Lunchmeat is often formed from pieces of meat glued together with a gel excreted by bacteria called microbial transglutaminase.  It is the same as tissue transglutaminase produced by your body when exposed to gluten and causes the same damage.  Microbial transglutaminase is also used in dairy products like ice cream, cheese, and yogurt for that smooth creamy texture.  Microbial transglutaminase is used in many manufactured food products.  Here's an article about it....

And another....

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/full

Yes, it can take longer than six months for antibody levels to come down.  It may take eighteen months to two years, or even longer in some people.  There are other autoimmune diseases that can cause elevated ttg levels like diabetes or Hashimoto's thyroiditis.  Your doctor can easily monitor you for these with a simple blood test.

Making a few more changes to your diet might help.  Sometimes gut bacteria feed on the things you're not digesting properly and cause that gas and bloating.  This is Small Intestinal Bacterial Overgrowth.  Again, an easy test for this.  Eliminating dairy and legumes (beans) might help. 

I followed the AutoImmune Paleo Protocol diet.  It really helped me.  It's basically meat and veggies, but no legumes and no dairy and no grains (not even rice).  I even eliminated nightshades (potatoes, tomatoes, eggplant and peppers).  Nightshades, especially potatoes, contain alkaloids that promote leaky gut syndrome.  The AIP diet is a diet to promote healing.  You can slowly add more foods into your diet as your healing progresses.  

You're doing the right things so far, eating whole foods cooked at home.  Not consuming processed gluten free foods is a good idea, too.  They often use that meat glue mentioned earlier to improve flavor and texture.  

One more thing you can do is to get checked for vitamin and mineral deficiencies.  Celiac Disease causes malabsorption, so we may not be getting all the vitamins and minerals we need.  Vitamin D, the eight essential B vitamins, and magnesium are often low in the newly diagnosed and deficiencies can cause anxiety.  

You've made wise choices so far.  Just relax, give yourself time to heal, and wear a mask if you go out.  And spend a lot of time on the forum with us.  There are lots of interesting articles and recipes! 

Hope this helps!

Knitty Kitty

 

[Kate333]

8 hours ago, knitty kitty said:

Kate333, 

Welcome to the forum!

Fresh beef does not contain gluten. Here's an article that you might find interesting...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5622696/

I'm sure other meats are gluten free as well, however, you mentioned you sometimes ate lunchmeat.  This may be problematic.  Lunchmeat is often formed from pieces of meat glued together with a gel excreted by bacteria called microbial transglutaminase.  It is the same as tissue transglutaminase produced by your body when exposed to gluten and causes the same damage.  Microbial transglutaminase is also used in dairy products like ice cream, cheese, and yogurt for that smooth creamy texture.  Microbial transglutaminase is used in many manufactured food products.  Here's an article about it....

And another....

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/full

Yes, it can take longer than six months for antibody levels to come down.  It may take eighteen months to two years, or even longer in some people.  There are other autoimmune diseases that can cause elevated ttg levels like diabetes or Hashimoto's thyroiditis.  Your doctor can easily monitor you for these with a simple blood test.

Making a few more changes to your diet might help.  Sometimes gut bacteria feed on the things you're not digesting properly and cause that gas and bloating.  This is Small Intestinal Bacterial Overgrowth.  Again, an easy test for this.  Eliminating dairy and legumes (beans) might help. 

I followed the AutoImmune Paleo Protocol diet.  It really helped me.  It's basically meat and veggies, but no legumes and no dairy and no grains (not even rice).  I even eliminated nightshades (potatoes, tomatoes, eggplant and peppers).  Nightshades, especially potatoes, contain alkaloids that promote leaky gut syndrome.  The AIP diet is a diet to promote healing.  You can slowly add more foods into your diet as your healing progresses.  

You're doing the right things so far, eating whole foods cooked at home.  Not consuming processed gluten free foods is a good idea, too.  They often use that meat glue mentioned earlier to improve flavor and texture.  

One more thing you can do is to get checked for vitamin and mineral deficiencies.  Celiac Disease causes malabsorption, so we may not be getting all the vitamins and minerals we need.  Vitamin D, the eight essential B vitamins, and magnesium are often low in the newly diagnosed and deficiencies can cause anxiety.  

You've made wise choices so far.  Just relax, give yourself time to heal, and wear a mask if you go out.  And spend a lot of time on the forum with us.  There are lots of interesting articles and recipes! 

Hope this helps!

Knitty Kitty

 

Hi Knitty Kitty (love that name!). 

Thanks for your comments, encouragement, and article links.  Very enlightening!  I had heard of MTG, often called "pink slime," but never knew it was so commonly used not only in the meat industry but in so many others foods as well. And I thought my lunchmeat, labeled "gluten-free, Nitrite-Free, Antibiotic-Free and Casein-Free" was safe. (I eat only Applegate Brand lunchmeats, which that company labels gluten-free and numerous Celiac groups, articles have touted as "safe"...).  Interesting, its ingredient list also notes "Pork***"  I guess that's a big red flag for MTG or "fake" pork?  Interesting that MTG has been banned in the EU for a decade, yet here in the US, food companies are not even required to disclose or list it as an ingredient on any foods.  Well, darn!! I guess I have ANOTHER reason to be paranoid about food safety (in addition to gluten and CV worries).😓   But rice and potatoes?? Geez, do I have to give those up, too?  They are so natural, cheap, basic, easily digested......Sorry...Just too many foods to keep track of, and I don't want to end up losing weight due to anorexia in addition to indigestion and diet limits.  Gotta eat SOMETHING....

BTW, I laughed when I read that NIH article.  Perhaps you don't realize that this NIH "study," which concludes that there is little or no G in meats, was ENTIRELY funded and staffed by the BEEF LOBBY?? 😂  So, I would take it with a HUGE grain of salt (gluten-free, of course).  How can I tell?  See the article notes at the very bottom of the study.  I list the key ones here in boldface:

"Acknowledgments

"This project is funded by the Beef Checkoff. ..."   

Author Contributions

"S.H.M. and A.M.C. devised the gluten analysis study and wrote and prepared the manuscript;" 

Conflicts of Interest

"S.H.M. and A.M.C. are employed by the National Cattlemen’s Beef Association."  

FYI, BC is a targeted research/PR marketing program of the Catteman's Beef Board (a big pro-beef lobby). It funds and staffs many "fake," biased, pseudo-science studies to fool consumers and minimize criticism/awareness of health hazards of their products which, of course, would lead to declined meat sales. See https://www.beefboard.org/checkoff/

NCBA is ANOTHER beef industry lobby/marketing group. Both of these "associations" have a very long history of trying to silence, discredit, or minimize REAL objective science/studies that question the health safety risks posed by consumption of their industry "products"...from heart disease to use of additives, antibiotics, unsafe farming practices.

IMO, it is awful--and IMO dangerous--that esteemed orgs like NIH even allow their good reputations to be tarnished by publishing so many of these so-called "studies" funded/run by obviously-biased trade groups and lobbyists like BC/NCBA.  This only legitimizes junk science and consumer fraud.  But at least NIH now finally requires conflict of interest "disclosures" ....it took DECADES of complaints by health professionals to get them to even do that.  But, as you can see in this case, these notes are intentionally buried at the very bottom of lengthy, highly technical articles (which most laypeople and even the media don't even notice).  I know groups like BC and NCBA (like tobacco and other industry lobbyists) regularly lie to the public, but I'm really ashamed of the NIH for HELPING THEM lie to us when they KNOW it can endanger our health!!

[knitty kitty]

Yes, I was aware that article was funded by the Cattlemen's Association.  

Every Celiac is different. Celiacs can react to different gluten peptides.  Celiacs can have different tolerance levels.  This might explain more thoroughly....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6949940/#!po=8.50000

 

The final decision about what to eat would be yours.  You have to find what works for you.  

The AIP diet gets you down to the basics where your body can heal.  You can then add in more variety according to what your system can tolerate.  

You will never learn to swim while hanging on to the side of the pool.  

Hope this helps!

Knitty Kitty 😸

[Kate333]

Thanks KK.  Am just so new to all this...recently diagnosed and began gluten-free diet just a few months ago...

There is so much info. out there, esp. "don't eat this...don't eat that"  ..makes me so confused, afraid to even trust clear labels (gluten-free vs. "CERTIFIED" gluten-free??) or afraid to try anything that could [even remotely] trigger a bad indigestion reaction, be harmful to my gut/health. BTW, I have Celiac AND IBS/SIBO so double-whammy! 

I guess I will feel more confident about those "swimming lessons" gradually, as time passes and I hopefully see the beginnings of some real improvement (blood tests and less freq. D, C, gas).  I need to first master the "kiddie paddle" (learning how to protect myself) before being more adventurous, attempting the diving board into the deep end of the water (a return to more or less confirdent, "normal"-feeling meals, digestion)....😉.

[cyclinglady]

1 hour ago, knitty kitty said:

Yes, I was aware that article was funded by the Cattlemen's Association.  

Every Celiac is different. Celiacs can react to different gluten peptides.  Celiacs can have different tolerance levels.  This might explain more thoroughly....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6949940/#!po=8.50000

 

The final decision about what to eat would be yours.  You have to find what works for you.  

The AIP diet gets you down to the basics where your body can heal.  You can then add in more variety according to what your system can tolerate.  

You will never learn to swim while hanging on to the side of the pool.  

Hope this helps!

Knitty Kitty 😸

I agree that the AIP diet or even the diet that Dr.  Fasano uses for non-responsive celiacs might be able to jumpstart a newly diagnosed celiac.  (Though I admit, Gatorade which is on Fasano’s diet,  is not very healthy in my opinion, but he is a pediatric GI and must deal with kids.)  I also agree that real foods and avoiding/reducing processed foods would be good not just for celiacs but for all people.  It might eliminate so many food driven illnesses, like insulin resistant diabetes.  I also agree that every celiac is different and can have a lower threshold for gluten and typically can struggle with other intolerances and illnesses.  
 

We each need to find our way.  😊

 

[gratiba]

Thank you Kate for your useful information and it is much useful to us. Thanks for your informative post to hare with us.

[Kate333]

3 hours ago, gratiba said:

Thank you Kate for your useful information and it is much useful to us. Thanks for your informative post to hare with us.

You're welcome Gratiba!

I know I'm a bit long-winded (I will try to work on that!) and that some of my views, esp. re: negative effect of big pharma/influence of corp. $$ on medical research/treatment decisions, are still hotly debated--even in the medical community.  But the last few years of health challenges and personal experience have certainly made me more skeptical, diligent about trying to research, verify comments from doctors and claims/promises of pharmaceutical and food companies BEFORE just assuming they are all accurate, accepting them as "gospel truth".  I think I am also a bit more careful about what I eat because I am newly diagnosed, still learning, and struggling with both celiac disease and IBS.

[Awol cast iron stomach]

On 6/26/2020 at 8:17 PM, Kate333 said:

Thanks AWOL and others.  I have pretty much ditched ALL packaged food, even labeled gluten-free (with the one exception of gluten-free-labeled brown rice because I want to get some fiber in my diet).  I mostly eat only meat, chicken, fish (bought raw and cooked at home by me), eggs, fresh fruits and veggies, which I thoroughly rinse before eating--CV paranoia as well as G...:).  That kind of diet simplicity reduces my time in stores, hunting for "gluten-free" labels, and the extra expense of gluten-free products.  I don't bother at all with gluten-free packaged, baked goods. (I tried a few items and, IMO, most of this packaged stuff on the gluten-free aisle taste like compressed sawdust😝) and--like non-gluten-free food--it's so full additives, I wouldn't feed it to a dog. 

Weird Q: Does anyone know whether fresh red meat/beef/chicken/turkey/ham could contain trace gluten from animal feed or pasture sources?  It's no secret that farms, in general, are not very clean, sanitary places and that farmers ROUTINELY use antibiotics and other "fillers" to "fatten" (via feed or injections) these animals to maximize their sales profits.  If farmers feed animals wheat, barley, rye (in addition to the usual corn, grass, oats) or it inadvertently gets ingested by animals, isn't it at least POSSIBLE for people who buy, consume meat to get indirectly exposed to G the animals have eaten?  I just wonder because my tTG (gluten) test numbers have not fallen back into the normal range after 6 months on a gluten-free diet.  I would prefer to just eat vegetarian, but meats are a good source of protein, don't seem to trigger my gut, and I assume bean production/harvesting is also a cross-contamination risk because many farms grow/harvest/package more than one crop (eg. beans AND wheat, barley, or rye)...

Thanks for reading and any replies.

    

Sounds like you are well equipped with the natural inclination to "to with your gut" it will continue to serve you well. In time I did obtain the gluten-free flours and make my own baked goods. I was never a baker in hindsight I know why,the airborne flour made me all foggy and error prone. 

Lots of things get answered for us once diagnosed.