Need Recovery Help Please.

[ChargersFan]

Hi everybody,

 

I am a student at Berkeley. I was diagnosed with Celiac disease 8 months ago through a blood test showing antibodies, as well as a genetic test (not a biopsy). Since then, I have been gluten free. It took me a month or two to get the hang of it fully, so I would say I have been strictly gluten free for 6 months now.

 

It took a year of very bad symptoms - terrible acne, hair loss, chronic diarrhea, bad depression and anxiety, anemia and fatigue - before I got diagnosed. I recently conquered the anemia after supplementing for months with iron, however all of my other symptoms are here to this day. My acne and hair make me not want to look at people, let alone socialize. My girlfriend left me for someone else, said I was 'not who I used to be'; I know she just means I am ugly.

 

Long story short now, I had a endoscopic biopsy done a week ago, results just came back showing Active Celiac Sprue, a.k.a my gut is not healed, and I might as well be at day 1 of this gluten-free process.

 

I know what you are thinking, and it is what some of you may have heard yourselves and what my doctor told me after the results came back, "Gluten is getting in your diet somewhere and you are not doing a strict enough diet". Kindly, let me stop you there. My symptoms were so clear, that my parents (thank God for their support during this process, truly) have had me on a gluten free diet plan; I get all of my meals, every single thing I eat actually, from a nutrition company that makes only Gluten Free meals.

 

Please. Somebody give me hope. I want to give up. What can I do to heal.

[Ennis-TX]

With me my acne cleared up removing dairy, face many celiacs have issues with it. One big thing is your villi produce the enzymes to break it down...damaged villi means you do not break it down and can cause havoc with your gut and immune system.

I had to take collagen and biotin "Beauty supplements" from neo cell for a few years to keep my hair health, I now just take a collagen or bone broth supplement, which is great for your gut health also.

Mental issues, fog, performance, anxiety, etc. Can be a issue with B-vitamins and Magnesium. DO look up deficiency symptoms with them. B-vitamins need to be taken full spectrum not just a few of them. I use Liquid Health Energy & Stress, and Neurological support 1tbsp each 3 times a day. Magnesium, if you still have loose stools then try Doctors best or another Magnesium Glycinate.

Food, I would consider double checking the stuff the company is providing, you should also consider checking any medications. CC issues can also come from contaminated and scratched utensils, cutting boards, etc. IF FLOUR is used in house or around you it can be air borne for hours. You inhale it and some gets stuck in the mucus in your nose...it drains back and that tiny amount that gets digested will trigger the immune system....no this is not paranoia many of us avoid bakeries, and places where flour will be heavily air borne.
Consider checking your shampoo and lotions....if gluten is used in it sure your not going to eat it but your going to touch it with your hands and probably touch food with said hands before eating...maybe some gum (done this last one years ago)

 

[cyclinglady]

At least you know where you stand.  

The logical assumption would be that you are being exposed to gluten.   I know that you think the food service is not the culprit, but unless you tour the kitchen and speak to the owner, you will never know.  Find out exactly how they process the food.    Are you consuming oats?  Did you ever kiss your ex after she had a beer or gluten-containing food?   Where do you live and with who?  Are your roommates cooperative?  Do they eat gluten in your dorm room or apartment?  

Are you on break?  This would be the time to eat and prepare only foods that you make or can read the ingredients. 1.  No eating out.  2.  No oats.  3. No processed foods unless they are certified gluten-free.  4.  Consider the Fasano diet or the Autoimmune Paleo diet.  The AIP diet might help your acne.  Keep a journal.  Celiacs usually have more than one issue or intolerance.  For example, garlic and onions will flare my Rosacea which is like acne.  It is actually called Acne Rosacea.   See if you have triggers.  By now, you should not need to supplement with iron.  So your anemia really might not be resolved.  Mine was fine within a few months and then I stopped supplementing with iron.  However, I knew the gluten-free diet well because my hubby has been gluten-free for 12 years prior to my diagnosis.  Still I had to figure out those intolerances.  

It is hard to help without enough information, but odds are you are getting gluten into your body.  You just need to figure out the source.  

Maybe you just need more time to heal.  Are your antibodies down?  You never had the diagnostic biopsy.  That would really determine if you have improved.  For all you know you could have started with no villi.  Maybe now the damage is not as severe.  

You are young.  Chances are, your looks did not chase off your girlfriend (girls are not so visual as guys).  She probably could not handle your depression and anxiety.  Or maybe she was just ready to move on.  I dated a lot of guys before I got married.  Depression and anxiety are so common with celiac disease.  It often resolves once you heal.  

Hang in there!  

Edited December 20, 2018 by cyclinglady

[frieze]

no snacks, no nothing into GI tract that is not gluten free.  meds, supplements, shampoo that gets in your eyes >nose>gut.   Only takes the occasional glutening to keep the reaction going.

[Presenttime14]

Some people with Celiac Disease also need to eliminate Dairy.  Remember there is a learning curve in this process and at times it can be discouraging. Keep in mind there is always a silver lining and a light at the end of the tunnel.  You can do this, remember the book called "The little engine that could".

Look at this process as being a detective. You have a case to solve or a research project.  You are looking for the gluten culprit.

There are gluten tester ezgluten is one.  The issue with these are it can only test to 10-20ppm anything below that won't show on the test. I don't know if it tests non food items.

Try researching any products that go on your skin. Wheat gluten are often used as fillers and binders in shampoos, conditioners, lotions and medicines.  Corn is also used, if it is an issue.

Also MTHFR gene is where you are unable to process/utilize Vitamin b.  I have to use an activated methylated vitamin B complex. I also take a vitamin d supplement. 

I had to separate my food, cooking pans, utensils, cleaning supplies and change to non porous surfaces.  If the food you are eating is processed in a kitchen or facility that also processes wheat, barley, rye or oats, there is always the risk of cross contamination and it doesn't take much to cause issues. The countertops, pots, pans, and cooking and eating  utensils, ovens, microwaves and so on even the fridge can be an issue.  Something as simple as the sponge used to clean the items everyone uses.

I remember walking into the kitchen and feeling as if I was walking into a mine field.  One night before I went to bed, I asked, for some answers in regards to …  The answer was very clear. I was in a war zone everyone was getting shot and the only reason why I didn't get shot was because I didn't have any Teflon on me, (non stick pans).  I use only stainless steel now. I write down my questions before bed and in the morning I write the answer.  If I don't remember the dreams I write that down. It will send a signal to your subconscious that your listen for the answer and your recall will get better.

Keep a journal of what you eat and how you feel physically, emotionally and how it effects you.   No matter how minor the symptoms seems write it down and how you are affected. 

I know this is time consuming and it can be overwhelming but start with the things you haven't ruled out yet.

You've mentioned your food is gluten-free.  Is it a dedicated kitchen? What happens to your food once your receive it. Do you have your own utensils plates cups? Not having a dedicated Kitchen is a big issue. Room mates and others in the kitchen may not be as conscious of their actions and it could be an issue. Something as simple as a sponge used to clean pans that have had gluten in them and everyone uses. Toasters are a big culprit, Ask for the top shelf of the fridge or if it is in the budget, get a small on for your food only.  This also goes for condiments such as mayo, ketchup, mustard and such you can the them in packet so there isn't a risk also beer can be the culprit. 

The skin is the largest porous surface area.  Any thing you put on your skin could have gluten in it.  If in doubt call the 800 number on the product and ask them.  I also believe there is product list available of gluten-free products. When in doubt, leave it out.

There is a learning curve to this process.  

The National Celiac Association can give you updates on products and recalls / warning on products.

If the food you eat is made in a Dedicated Gluten Free Kitchen, check all products you use on your skin and medicines you take. The skin is the largest porous surface area.  Any thing you put on your skin could have gluten in it. wheat and corn are often used as a binder or filler. If in doubt call the 800 number on the product and ask them.  When in doubt, leave it out.  Your pharmacist can help you search the medicine. They have access to databases of meds and their ingredients.

I am confident you can do this.  Remember the learning curve and as a student you can put your research skills to good use. 

There is a book called, "The First Year: Celiac Disease and living Gluten Free". By Jules E. Dowler Shepard.  Forward by Alessio Fasano M.D. (founder of the center for Celiac research at University of Maryland). A patient-expert walks you through everything you need to learn and do.  I think it is less then $20.  It is a good resource.  There might be some information in that may help you.  Your local library may have a copy.

Best wishes on your journey

 

[cristiana]

Hi there,

Do you have blood tests to compare TTG levels?

My TTG antibodies were still high some four years gluten free (I think around 86).  Unfortunately my specialist had omitted to give me that blood test since diagnosis so I don't know if it was temporarily elevated at 86 or whether they were coming down very slowly.  At the time of diagnosis my levels were over 100 but that's the cut off point here in clinics - they could have been stratospheric for all I know and were just taking their time to come down.

Well, after this shock revelation and months of what I thought was gastritis pain my consultant sent me to see a very good nutritionalist.  We agreed that I would not eat out again by way of an experiment.  Also, around that time my oven broke and my dishwasher broke at the same time.  The new oven arrived and I was given the bottom oven to use exclusively for gluten-free food.  My gluten eating family use the top.   As for the dishwasher we decided we wouldn't replace it immediately.  So from then on it became my almost exclusive responsibility to wash the dishes and I was really careful.  (I'm sure dishwashers are normally OK, but for some time my old one didn't seem to be cleaning things properly).

Now, fast forward to about a month ago.  I had a blood test.  Finally my TTG levels were down to 14!  Yay!

So what did I do next?   I never learn. I ate a whole batch of gluten-free oat cookies in celebration (something that I have had problems with since diagnosis.  My nutritionalist had said to me I might like to try them again once I was healed but perhaps I shouldn't have eaten so many!)    I also went out to eat in an ostensibly "gluten free option" restaurant just over ten days ago.  I had chills and nausea when I left, felt very flushed and seasick, and have waves of nausea most days since.  It feels somewhat like gastritis again, which makes me think it is gluten damage.

Anyway, I hope that maybe something learned in my own journey might be of use to you?

And I do agree - lactose is best avoided while you are recovering. I was still having D in the early stages when I consumed milk or soft cheese or yoghurt.  I gave my system a complete break from dairy for a few weeks and it really helped.